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Autism and Abnormal Sleep Patterns in Adulthood

It is well documented that adults on the autism spectrum tend to experience aspects of life differently from people who are neurotypical. Social situations, emotional regulation, and even physical sensations are all experienced differently by people with autism compared to their neurotypical counterparts. Indeed, the simple act of going out to buy groceries or order food at a restaurant is an incredibly different experience for somebody with autism than the experience of neurotypical people.

But while it’s true that many of the experiences of people on the spectrum are becoming better understood and documented by diligent research over time, there’s still many aspects of adult autistic life that are not well researched, understood, or accounted for. One of these aspects of life has recently been highlighted over here at Spectrum Fusion: the issue of abnormal sleep patterns.

In the past few weeks, several of our Reactor Room participants, this author included, have opened up to Doctor Ham and other Spectrum Fusion members about our issues with getting the right amount of sleep and our issues with when we feel we need to sleep. Nearly across the board, participants of the Reactor Room have expressed some issue with their sleeping, ranging from waking up frequently during the night to having difficulty falling asleep at all to having little or no control over when they fall asleep, even if it’s in the middle of the day. Other participants have expressed an inability to get up due to how sleepy they feel, even after what should be sufficient amounts of sleep. One participant in particular described how being tired is one of the worst feelings they ever experience, describing how their experience of tiredness often leaves them incapable of thinking straight or focusing on anything and leaving them in a ‘vegetable-like’ state, often accompanied by headaches, strange feelings in their gut, and extreme irritability. They say they feel these extremes of tiredness even when they’re only “just beginning” to get tired, or even when they’ve gotten a full night sleep the night before and the day is only just starting to creep into evening.

While it’s true that correlation does not prove causation, we at Spectrum Fusion found it interesting that so many of our Reactor Room participants had similar stories about problems with sleeping. It’s long been known that children and teens on the autism spectrum tend to have difficulties sleeping, and a great deal of research has been devoted to this. Unfortunately, like most autism research, this research was focused solely upon children and teens and adults on the spectrum were, as usual, excluded from any studies. What’s more, while it seems that we’ve long since confirmed a link between autism and sleep abnormalities, very little is being done to address or correct these abnormalities, especially in adults.

Naturally, it does not seem likely that sleeping issues that are experienced by children and teens would simply go away upon adulthood. As we have established numerous times, children on the spectrum grow up to be adults on the spectrum, with similar problems and issues and challenges to those they had in their childhood that they need to overcome. And it’s especially tragic that there is no research being done into this with adults on the spectrum because sleep issues are even worse for adults than they are for children. While sleep issues might lead to problems at school for children, for adults it means lost jobs, an inability to get hired, and potentially even loss of their homes should their sleep issues make them incapable of keeping work.

With everything discussed so far in mind, some of the things stated by our Reactor Room participants become quite interesting. This all raises questions of how people on the spectrum may experience sleep and tiredness differently from neurotypical people. The participant who described just how unpleasant it was being even mildly tired is incredibly different from how neurotypical people tend to describe feelings of mild exhaustion. The sheer intolerableness of the situation is extreme, and comparable, perhaps, to many other sensory issues that autistic people face when dealing with things like food or fabrics or bright lights or loud noises or any number of other physical sensations. These may not just be sleepiness issues that can be corrected by “pulling themselves up by their bootstraps” and dealing with it.

At this moment, it’s likely that my own family is raising their eyebrows at this blog and wondering if I’m trying to make excuses for my own foibles when it comes to sleep; that I’m trying to say that we on the spectrum should just be left alone to sleep however we please with no consequences. This is not, however, what I am saying. That would not benefit anybody and would only further preclude adults on the spectrum from finding employment. Alas, as nice as it would be to sleep whenever we want for as long as we want, this is still the real world and that is not a feasible goal.

What I am suggesting, though, is that more research be done into this area, particularly when it comes to adults on the spectrum. While the research done into children on the spectrum is admirable, the research is still quite lacking when it comes to autistic adults. One might consider this a call for autism researchers to take a closer look into this topic and see what comes up.

I would also recommend that adults on the spectrum, if they are having issues with their sleep patterns or sleep habits, to start looking into sleep therapies or volunteering for sleep studies so that they can have their issues better understood. Sleep research has become very prominent in the psychological community in recent years, and it is surprisingly easy to find researchers who need participants in sleep studies or who are willing to analyze people's’ sleeping patterns and offer advice and possible treatments. And if enough autistic adults can give these researchers a decent data pool to draw conclusions from, they might be able to devise therapeutic methods that will work better for us than us all continuing to struggle in vain to correct our sleep habits if it is clearly not working.

The Emergent Positive Effect of Spectrum Fusion on Mental Health - Testimonies from Reactor Room Participants

One very consistent issue that adults on the autism spectrum find themselves dealing with is their own very sense of self worth and belonging. Indeed, due to the struggles that autistic adults face every day, many of them find themselves struggling with feelings of worthlessness, hopelessness, and a complete lack of belonging. And frankly, given all of the issues that adults with autism have to deal with on a daily basis, be it their own mental health issues intruding into their lives, the lack of support most autistic adults receive after graduating high school, or other external factors such as social unawareness, joblessness, or even discrimination, it’s incredibly easy for them to lose hope and confidence in both themselves and how feasible it is to live in the world with other people.

Indeed, many of the people who have joined the reactor room have shared similar sentiments about what their life was like before they were approached by Spectrum Fusion and joined the Reactor Room. It's very telling to hear them describe how they felt about where their life was going before they joined, compared to how they feel now.

Many if not all of the Reactor Room participants share similar feelings about how their life was before they joined up. They expressed dismay at how they felt their efforts to improve their lives were in vain, how they felt they did not fit properly into society, and how they felt isolated and alone. For example, one gentleman by the name of Chris, who worked with Spectrum Fusion when it was still based in Australia, expressed his frustrations with life before he joined the organization.

“Before I met Heidi,” he explained, “I was trying a lot of different aims to improve my life but all of them were to no avail. I was feeling a lot of emotions but none of them were positive.” He also explained that he felt like people often had the “wrong impression of him” and stated that he could not feel comfortable around other people and that he felt like he was forced to “walk on eggshells” everywhere he went to avoid offending other people or getting into trouble.

Most other participants professed similar feelings of being trapped or persecuted or dejected and helpless. One woman aired her grievances about how the system tends to ignore adults who aren’t immediately recognizable as being severely autistic, stating “unless you were low functioning you weren't diagnosed, you were just put in the 'hard to work out basket.'” She also stated her distress with some of the incorrect public perceptions of autism that caused her pain in her daily life, such as how she was “really offended by [the idea that] ‘autism equals no empathy.’” Another woman revealed her deep state of mental distress from a few years back, saying “I thought I was going nuts. I thought I had to go into a mental institution because I didn't understand anybody and people didn't understand me.” And yet another man indicated the pressure of feeling different and excluded from the rest of the world, saying “It puts a lot of social pressure on you because you feel like you're different. You feel like you don't fit in. Just knowing that your brain doesn't work the same way as everyone else's.”

And the stories continue in this way. One reactor room participant by the name of Marcello described his difficulties with bringing himself to socialize with other people. Thankfully, and also tellingly, he expressed that things had begun to get better for him now that he’s joined the Reactor Room and started socializing with the community that has formed around Spectrum Fusion; a common sentiment among people who have gone through the reactor room program. “Normally in regular society,” he said, “I couldn't talk to somebody. It's hard for me to do that.” He went on to say, “But here I have built a relationship with these people... I feel more comfortable and more safe... It makes it easier to attach and to learn. My disability makes it hard for me. Thankfully it is a safe place to learn things”

Another member of the reactor room named Matt expressed his anxiety before joining the reactor room. He mentioned how he desperately wanted to be able to “stand on [his] own two feet; to be out there and self-sufficient,” but that before he joined the Reactor Room, he had no idea what he wished to do with his life and wasn’t sure what direction his life was going to go in, especially after he graduated college. However, he said that he “had a better idea of what to do the more [he] interacted with Spectrum Fusion,” and was now more confident because he not only knew what path he wanted to take in life, but that he also felt more capable and confident that he could achieve what he wanted.

Other members have described similar sentiments about the positive impact that Spectrum Fusion has had on their mental health and their lives at large. One mother, who wished to remain unnamed, spoke about her daughter saying, “Since we came across Spectrum Fusion it has made a big difference in my daughter's life. Things seem to make a lot more sense in her life.” Another Reactor Room participant compared his life before participating in the program to how it is now and said “there’s absolutely a difference, if nothing else emotionally, because it’s definitely felt like it’s actually put my life in a certain direction… before the Reactor Room I was absolutely directionless and I was not going anywhere fast.” And yet another participant expressed joy at being a part of the Reactor Room. “It felt nice,” he said. “It felt like I was [a part of something] bigger than myself.”

It’s clear to see that at the absolute minimum, Spectrum Fusion does a lot to build the confidence and hope of people who join. The mental health effects of being a part of Spectrum Fusion have been positive across the board. By providing support, community, and a sense of belonging, as well as a more defined path to achieve their goals and an avenue into integrating with the rest of the world, the Reactor Room participants feel more confident, more hopeful, and less anxious and depressed than they did before they joined the organization.

Reactor Room Participant Followup: Ross Rubin

As we continue to work towards the next reactor room event, it’s time we took a look at another one of our Reactor Room participants. This time, we’re taking a look at Ross Rubin. Ross is a 39 year old who’s previously worked at other organizations, working with computers. Ross previously was looking for work in IT or in a server room, but in addition to keeping a job, he also wanted to pursue his other passions.

 

After joining Spectrum Fusion, it was decided that, where finding work with computers had stalled, Ross should focus more on trying to work with his true passion. Ross is a tinker, and has previously attempted to work with building things in miniature, and building replica models of movie props. It’s this love of tinkering that led Ross to try his hand at becoming an inventor.

 

At the Reactor Room, Ross proposed his idea for a new invention. He brought numerous sketches and drawings of what he envisioned his invention should look like, as well as a prototype of the invention that he’d had 3D printed by Brian Heiman of Imaginet. This invention idea was so well received, that many of our activators expressed interest in helping him bring his new invention idea to reality.

 

Unfortunately, the invention itself and much of the circumstances surrounding it is tied up in non-disclosure agreements and cannot be described in depth here. However, that mere fact should highlight just how promising of an idea Ross has on his hands if enough people would potentially like to develop it for themselves.

 

What is also promising is the fact that Ross has since managed to meet with many professionals in the industry. Ross has met with numerous contacts who have all been able to help him work closer towards his goal of bringing his product to fruition. This is big news for Ross because before this point he always felt nervous talking to people and has always preferred to be alone. Now Ross is holding skype meetings, following up on connections and leads, and meeting people on social media in his endeavors to bring his product to life. He’s expressed that he’s been delighted with how much progress he’s made and how many people he’s met that have been willing to help him further bring his ideas into reality, and that, where before he felt desperate and anxious about his future, he now feels much more secure and confident about what is to come. Ross says that he’s been incredibly pleased to meet with so many people and that it’s really helped him to further develop his social and business skills.

 

Ross is investigating his options in terms of selling his license vs. partnering with an organization with whom he can white label the product. There will be much more to cover about Ross and his invention once it is on the market and we can safely write more about it. Until then, we wish Ross all the best with his invention and as he continues to move forward!

 

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Self-Actualization as Self-Advocacy

In an earlier blog of mine titled “The Complex Relationship between Self-Awareness and Self-Advocacy,” I went into great depth about the relationship between self-awareness and self-advocacy. I asserted that if one is to advocate for themselves, or indeed at all, they need to have a measure of self-awareness allowing them to recognize both their own strengths and weaknesses, as well as the simple fact of reality that people on the spectrum are a tiny minority in the greater population of our world. I wrote that it is unreasonable to expect the rest of the world to kowtow to our every whim and that screaming and ranting and raving and demanding unreasonable things will only make us maligned in the eyes of the greater population we seek to help us. I observed that, unfortunately, many advocacy groups do this anyway and that we need to take action to curb the damage done by these overzealous “activists” that intend to speak for the rest of us. And I claimed that the absolute best way to advocate is to come at the problem from a position of strength, promoting one’s talents and abilities and showcasing what a boon people with autism can be to the community when they’re allowed to practice their talents, rather than demanding that we be compensated for our own shortcomings.

However, there is another method of advocacy that I only briefly touched upon in the previous blog that I feel needs to be understood in more depth. In the previous blog, I brought it up a few times as “self-actualization.” Self-actualization, or self-improvement, is one of the two great methods of self-advocacy. If the first method, described in the earlier blog, can be summed up as “promoting your strengths,” then self-actualization can be described as “overcoming your weaknesses.”

It is undeniable that being autistic comes with certain disadvantages. In the previous blog I referred to the quote of “different not less” and how I originally did not like the statement, but upon further reflection came to accept it. In the past I’ve also compared being autistic to being a specialized tool as opposed to a swiss army knife. It’s true that, say, a high-end electronic screwdriver can screw in a bolt much faster than a swiss army knife, for example. But on the other hand, an electronic screwdriver can’t so easily uncork a wine bottle, open a letter, pop a bottle top, or file your nails. And I discourage anyone who wants to try and prove me wrong on that last one.

As autistic people, there are things we cannot do as easily as neurotypical people. Many of us cannot pick up on social cues as easily, have trouble regulating our emotions, or have trouble translating thoughts into words or speech into comprehension. But that’s not even the end of the issues that people with autism may face. We also have to contend with, not just a lack of skills that other people seem to naturally have, but wholesale new issues that seem to crop up out of nowhere in people with autism. Extreme sensory sensitivity, such as sensitivity to sound, light, and touch is something that many of us contend with. Feelings of anxiety are incredibly common among people with autism, as are obsessive behaviors. Indeed, the number of troubles people with autism might find themselves saddled with are innumerable and may seem overwhelming.

Another analogy that I am quite fond of using when talking about people with autism is comparing them to characters from a Dungeons and Dragons game. For those who have never played Dungeons and Dragons, in some versions of the game, you build a character with a set number of points to distribute into various stats, such as strength, intelligence, agility, and constitution, as well as a set number of perks or “abilities” that you can take from a list in the player’s handbook. In some games, however, it is also possible to take flaws as well. This naturally seems counterintuitive to building a strong character, especially since taking flaws is entirely optional most of the time. Indeed, most players that I have met don’t opt to take flaws. But the upside to it is that if you take flaws, it grants you extra points to put into stats or perks. This means that a low level character can have absurdly good stats or abilities… if they’re willing to saddle their character with a bunch of really intense flaws that you can be certain will come up during the game and make things significantly more difficult for your character.

Autistic people are much like a character who’s player has decided to take flaws to boost our stats. On the one hand, we may gain intense focus and passion and talent, but on the other hand we are stuck with unregulated emotions, social anxiety, and sensory and comprehension issues.

And unfortunately, these issues will not simply go away. These are not flaws that are easy to just “get over” with enough time and patience. Nor are they merely annoying inconveniences as they happen in real time. These are persistent and incredibly stressful parts of autistic life that bother the people with ASD as much as they bother the people around them. And the sad truth is that these issues can snowball; as the people around those with ASD observe these flaws they may become unnerved and actively push people with autism away. In worst case scenarios, the cruelest among us might even make fun of them or discriminate them for it, which only leads to even more bitterness and more problems.

And sadly, while promoting one’s self from a place of strength (showcasing talents and abilities, and working within your strength to become a master of your chosen field) is a great way to move forward in the world and prove that there’s more to us than our flaws, it will not, on its own, be enough.

This is where self-actualization comes in. If we truly wish to make a mark on the world and prove to everybody that we are not all panicky, emotionally unstable, anxious, and overly sensitive, then we must not be panicky, emotionally unstable, anxious, or overly sensitive. If we are to earn the respect of the rest of the world, we must find the strength within ourselves to prove that we can overcome our own flaws.

To put it bluntly, we on the autistic spectrum must strive to be as neurotypical as possible.

I’m certain I must have raised some hackles with that statement. Many people on the spectrum take a certain measure of pride in being autistic, and these people get quite hot under the collar when people start talking about “curing” autism or people suggesting that they “shouldn’t be autistic.” And while that’s somewhat understandable depending on your perspective, the idea I’m promoting here isn’t all that new. In fact, we do it for children all the time and it’s almost universally seen as a good thing. After all, what are things like speech therapy and occupational therapy but learning improvement techniques that allow us to fit in better with neurotypical people and more capable of emulating them and interacting with them on their level?

And indeed, that’s just how it should be. As I’ve said in the past, it’s absurd to expect the overwhelmingly neurotypical population of the world to kowtow to our every whim and ignore our every folly. To do so would only invite ire. Furthermore, it would be disadvantageous for both the people on the spectrum as well as the neurotypicals to try and get around living together by fashioning some kind of insular, segregated society of people with ASD so we don’t have to put up with each other. Depending upon which side manages such society, one side would inevitably end up oppressing the other. Indeed, the only alternative is for both people with ASD and neurotypicals to live together. And for us to do that effectively, we cannot allow our flaws and foibles to get in the way by putting off and scaring away the neurotypicals that run the world. If I may be allowed some overly dramatic language for a moment, it is a neurotypical world and we must live in it.

And so, the best way that we can live in it is to be self-aware of both of our strengths and weaknesses. As I said in the previous blog, we must promote our strengths, certainly. The importance of that cannot be overstated. And what we have to offer the world is monumental. But it also cannot be denied that if we wish to live in this world, we must also make the effort to improve upon our weaknesses.

Thankfully, people are already lining up to help us… at least in our childhoods. The amount of services offered to children with disabilities, especially within the past decade or so, is astronomical. Special education programs have been improving slowly, but very noticeably and are helping more children with disabilities than ever. Speech and occupational therapies are available even for children of low socioeconomic status and children are getting chances that would have been unheard of just two decades ago.

Unfortunately, nearly all of this aid drops off when children become adults. And despite programs like Spectrum Fusion cropping up recently, nearly all other therapies and programs stop bothering to help us when we grow up. Therefore it is up to us to improve ourselves and self-actualize to become the very best that we can be. It is up to us to devise and employ strategies to help train ourselves to become more capable of tolerating and living in the conditions of this neurotypical world. Because if we don’t we will find ourselves fading into obscurity; living by meager means if any at all, with little social contact as we sequester ourselves away from the stimuli that hound us so.

Surely this all seems very fatalistic and discouraging, but I assure you it is not meant to be. Because while this is a serious matter, it is by no means a hopeless one. History is full of people on the autistic spectrum who overcame their flaws and disadvantages and went on to become incredibly prominent, successful people. History is full of people like Dan Akroyd, Tim Burton, Bill Gates, and even Albert Einstein, who were capable of overcoming their issues and making something great of ourselves. Even the great Temple Grandin, who started her life with very severe and challenging problems managed to overcome them and make something great of herself, so don’t think for a second it isn’t possible. And for those who take some measure of pride in being autistic and don’t want to become one of the “NT’s,” you don’t need to worry; overcoming their issues hasn’t made them any less autistic, it’s simply made them self-actualized. It’s made them the best autistic people that they can be: People who are talented, focused, passionate, and driven, who are yet able to meet the world and the rest of society on its own terms and handle it with ease.

And if these people can do it, then don’t think for a second that you cannot. As I just said, even Temple Grandin, whose issues were so severe that it was suggested when she was a child that she be institutionalized for the rest of her life, managed to devise strategies and methods of working around her issues and flaws that she became capable of meeting society on its own terms.

The first step is to be self-aware enough of your own flaws: These things that bring you so much stress and pain that they seem insurmountable. I cannot overstate the value of introspection. Sit for a while and think on the problems you have and what strategies you might be able to employ to work through them. And if the roadblock in your path is truly too difficult to punch through, then think of how you might be able to build some kind of walkway around it instead.

Some issues might have easy fixes. For example, if you are incredibly light sensitive, you might curb that by wearing a hat or sunglasses. If you’re noise sensitive, you might dampen the noise around you by buying a comfortable pair of headphones. I myself am very touch sensitive, especially to clothes made of rougher fabrics, so I go out of my way to buy clothing made of specific fabric blends that allow me to more comfortably function and stop squirming and scratching at myself every moment of every day.

Other issues, such as emotional regulation, anxiety, and obsessive tendencies might be harder to curb. These issues might take longer amounts of time to parse through and come up with a solution as you introspect over them, and it might take time to implement them once a solution presents itself. It will not be easy by any stretch of the imagination, but it is absolutely possible. I encourage anyone with difficult issues to look up Temple Grandin and learn her story. If she can do it, we can do it.

And the results cannot be overstated either. Not only will the neurotypical people that we must inevitably live and deal with be less inclined to push us away when we have devised strategies for getting around our most visible flaws, they will be more inclined to help us with the flaws we have not yet managed to deal with and still could use a hand with. They will also be more inclined to listen to us when we ask for a moment of their time so that we can showcase the amazing talents, passion, and focus that come with being on the spectrum.

And this self-improvement isn’t just for the benefit of the neurotypicals. This isn’t us kowtowing to them the same way I’ve said that they should not kowtow to us. On the contrary, we do this not just for them, but also for ourselves. After all, surely finding ways to deal with, work around, and minimize the emotional problems, anxiety, uncontrolled obsessive tendencies, and sensory issues that autism brings would allow us to feel better about ourselves as well? Imagine being able to walk into a store and not feel anxious about talking to strangers. Or to be able to go to that party and not have a meltdown from all the overwhelming stimuli? There are things that we can do and experience that we would not have been able to before, without the monkey on our backs constantly making us uncomfortable, irritated, and overwhelmed.

It’s absolutely a process. And it will take time. And there will be stumbling blocks where we trip and fall. We might even backtrack at times. But if we keep working at it and keep moving forward, I absolutely believe we can make it.

 

Reactor Room Participant Followup: Matthew Curran's Experience

As always, we at Spectrum Fusion continue to follow our Reactor Room participants long after their main Reactor Room event. We continue to aid our participants in finding work opportunities, developing life skills, and nurturing their talents as they continue working towards their ultimate goals. This time we’d like to take a look at Matthew Curran.

Matthew is a 24 year old young man with ASD who recently graduated from college with a degree in media and video editing. Matthew hopes one day to work in movies and television, not as a movie or television star, but as one of the people behind the camera. He’s very passionate about media production and displays a considerable talent for it, able to edit together large amounts of footage quickly and efficiently. Despite his talent and a natural charisma and sense of humor, though, Matthew found himself in a rut.

Before joining the Reactor Room, Matthew was not doing much. After graduating college, despite having numerous project ideas that he wanted to pursue, nothing was really working out for him. Living at home with his parents, he had difficulty finding a job, and no real luck finding any sort of job that would allow him to pursue his passion. This was exacerbated by the fact that he was severely lacking in several basic life skills.

Since joining the Reactor Room, however, his life has started turning around quite rapidly. Matthew has made numerous connections in the media editing field who have been able to help him learn even more about his chosen field and allowed him to improve his already natural talent even further. He’s learned more about not only the editing process, but also the filming process as well, having worked with cameramen and sound techs to properly learn how to film and record footage that he then proceeds to edit.

Perhaps the most notable and tangible accomplishment of Matthew’s, however, is the release of his own Youtube show, “Can I Cook It?” Matthew’s show was created with a dual purpose in mind. Primarily, “Can I Cook It?” is meant to show off Matthew’s ability to smoothly edit video and audio in an easy to access format for future employers to look at. As a showcase of his talents, the videos are quite impressive, averaging between 7 and 10 minutes each, all with smooth visuals and audio mixing. It’s also quite impressive to watch him work behind the scenes, as he’s proven capable of fully editing these episodes in only a few hours after the filming takes place, sometimes even posting the videos on the same day. Most excitingly, Matthew has already been contacted by industry professionals complimenting him on the quality of his work and giving him advice for how he might improve even further! The eye of the industry is now on Matthew and he's incredibly excited to do more and more with his platform.

The show’s second purpose, however, is to help him learn a necessary life skill. Matthew was adamant that he needed to address his lack of basic life skills, and so decided to kill two birds with one stone by using his new platform to learn how to cook. So far, he’s already learned to cook four dishes, with a fifth one soon to be learned and filmed.

Already Matthew’s talents have picked him up some attention. Though nothing is confirmed yet, he’s already been contacted by several media professionals who are interested in working with him. In the future, Matthew has a number of big plans. Matthew has expressed interest in creating a vlog for Spectrum Fusion, helping to further spread news about what’s going on in the company and what we plan to do here in the future. One of his most interesting plans, however, is that he’d like to use his new position to take his talents abroad. Matthew has expressed interest in working in Japan or South Korea, where he would like to use his success to become an autism self advocate in the East. Matthew has an incredibly bright and interesting future ahead of him and we look forward to helping him reach his full potential as best we possibly can!

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A Quick Note for Employers: The Benefits to Hiring Employees with ASD

    Due to the major stereotypes surrounding people with autism, many prospective employers are wary about hiring somebody with ASD into their companies. Unfortunately, while the general perspective of people with autism among the public is changing, it is changing slowly, and there are still far too many people who see people with autism as being unfit to work or incapable of handling responsibility.

    The fact of the matter is, though, that people with ASD have many hidden talents that people who can’t look past their general social awkwardness can’t see. In fact, adults with autism are often surprisingly adept at specific tasks, even though they may lack in others. Adults with autism might be incredibly skilled technicians or coders or artists or any number of other things. The fact is that while your average, neurotypical employee might be reasonably good at “A, B, C, and D,” an employee with autism might be prodigiously good at “A,” while still needing aid with the rest. Or, to put it another way, a neurotypical adult is a “swiss army knife,” while an adult with autism is a “specialized tool.”

    It may take some work finding a place for an employee who is strictly a specialist rather than a generalist, but if a place can be found for such a person there are many benefits to be reaped. One might find projects being finished more efficiently and at a faster rate. Or that new solutions are being proposed to old problems.

    These are not the only benefits of hiring somebody with ASD. One of the big issues plaguing many employers when it comes to hiring new, younger talent is that many businesses see young adults as “flight risks.” They see young people as being more likely to stay for a few months before moving on to another job, meaning that the company has lost time, money, and resources that they put into training an employee that didn’t even stick around after the training was finished

    The thing about many adults with autism, though, is that, when they are treated properly, they are fiercely loyal. This comes from a combination of factors, such as how they tend to detest change, how sensitive they are to external factors that bother them, and how rare it is for them to find themselves in situations they are comfortable in. Therefore, when they find themselves in a situation and among people they are comfortable with, they cling to it fervently and loyally. The fact is, people on the autistic spectrum are often so averse to change that it’s more stressful to leave a job where they have regular work for the frightening unknowns that would come with leaving it. Likewise, if the job is also a place where they are comfortable and feel valued and safe, they will have little desire to leave at all for probably a significant length of time.

    The one hurdle to people hiring adults with autism is that if they are to perform their duties as efficiently as they can, and to engender the kind of loyalty described above, the employer has to be willing to make sure that their prospective employee is reasonably comfortable. This is not, however, as big a deal as it sounds. Adults with autism are less demanding than you might think. They aren’t likely to demand crazy payment or extraordinarily long breaks or that they get their own private office or anything like that. More likely, they’ll ask for something like a slightly laxer dress code so that they don’t have to wear fabric that irritates them. Or possibly the ability to wear noise-cancelling headphones if there are noises that are bothering them. Or maybe just not being accosted if they take a few extra short bathroom breaks to decompress.

    Most importantly, though, adults with autism like to know that they are valued. They crave validation, and that is not a particularly difficult thing to grant them. Simply telling them “good job” when they do well or occasionally letting them know that you are “glad they’re here” goes a very long way towards letting an adult with ASD know that they are valued in their position. They don’t need a kiss and a cuddle every twenty minutes to feel validated. Simply telling them they did well at the end of a work day is enough. And frankly, that isn’t very much to ask.

What You Are Really Communicating When You Say, "I Don't Care What You Think About Me."

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No Man Is An Island Unto Himself

Dozens of times throughout our growing up years, we are constantly inundated with life lessons that hammer into our heads how we should think, how we should feel, and how we should act. One of the lessons continuously thrown around is that we shouldn’t care what other people think of us. This is a lesson meant to promote free thinking among children, that they shouldn’t define themselves and their actions by what their peers want and feel, and that they should live their own lives unworried about judgment and live in the way they want to live.

And while to some degree this is admirable and wise advice, there is a propensity for many people to take it too far. As I stated in a previous blog, human beings are social animals. No man is an island unto himself, and everybody needs other people.

The issue comes when people take this message to the extreme and stop observing any social mores. Far too often people decide that ‘they don’t care what people think about them’ to such an extreme that they stop engaging in basic customs and manners. These people often end up mocking and rejecting anybody trying to advise them that they should consider acting with politeness and decorum as just another person whose opinion they should ignore (often referred to in internet terms as a ‘hater’ or a ‘troll’)

This is incredibly foolish. There’s something to be said about the young boy who likes pressing flowers and hosting ‘tea parties’ not listening to people when they say they shouldn’t engage in such activities. The same holds for the young girl who likes contact sports and bugs and lizards. But there’s a difference between engaging in personal activities or pursuing career paths that viewed by others as atypical, and the complete rejection of social niceties.

Not An Excuse For Rude Behavior

All too often, you’ll see people make flippant, rude comments, scream and yell obscenities at people who disagree with them, insult, judge, and slander other people for various reasons, and physically act out in ways that are unbecoming of anyone over the age of ten. And when those who observe or are affected by these kinds of actions try to speak out against it, many of these people respond with some variation on “I don’t care what you think.”

The problem for these people is that when they end up needing something, naturally, nobody is particularly enthusiastic about lending them any aid or giving them any consideration. Where people would be more inclined to help people who have a history of politeness and manners, nobody is particularly inclined to help somebody who will just turn around and start acting like a brat again. This results in these people being forced to resort to what effectively amounts to ‘kicking and screaming’ to get what they want, and, while they might ultimately end up getting what they want, only reinforces this cycle.

Let's Stop and Reevaluate Ourselves

Unfortunately, people with autism are very susceptible to this kind of behavior. Though this behavior is by no means exclusive to people with autism, the difficulty that comes with having ASD causes many of those who deal with it to act out in ways seen as immature, impolite, or even aggressive. However, these actions may not be as firmly discouraged as they would be with a neurotypical child. Many parents might take a sort of “they can’t help it” attitude towards these actions. And if this is the mindset that they carry, then they might overemphasize the “I don’t care what you think” attitude and pass it on to their children. In the minds of these parents, and eventually the children too once they’ve grown up, anyone who speaks out against their behavior, even if that behavior is unjustifiably aggressive or explosive, is a foolish bigot and best ignored. When somebody who is put off by these behaviors tries to make some sort of suggestion for how they might better act in the future, these parents, and eventually these adults with autism, parrot the age-old “I don’t care what you think,” deepening the divide between the autism community and the neurotypical everymen that we sorely need help and acceptance from.

Which isn’t to say there aren’t bigots out there and that people aren’t occasionally overly rude in response to the behaviors of those with ASD, but the number is probably less than people who ascribe to these notions think. In my experience, people have generally been accommodating, and most people only wish to help, but can quickly get pushed too far. Especially if people react explosively to people who are actually offering help.

The point I’m trying to make is that to say “I don’t care what other people think” is a self-defeating attitude because we need other people. Especially those of us in the autism community need the help of other people to move forward and to take this overly aggressive “I don’t care what people think of me” attitude not only hamstrings yourself but potentially hurts other people who have similar issues or attitudes as you do. This kind of attitude is already harming the autism community, and it will continue to harm it if we don’t stop and reevaluate how we comport ourselves.

   

 

 

What is Spectrum Fusion?

 Rice University students making a difference in the lives of adults with autism.

Rice University students making a difference in the lives of adults with autism.

Social Entrepreneurs

One of the big points of confusion many people have when they are introduced to Spectrum Fusion is exactly what it is we are. Are we a business? A charity? A gathering of activists? Several times people have seen what we have to say and simply determined that what we claim to be and what we promise is too good to be true. Unfortunately, that’s a reality we might not be able to escape for a while until our organization grows and enough feedback comes in to prove that we mean what we say.

However, it does raise the question; what exactly is Spectrum Fusion? Spectrum Fusion is clearly not a typical business venture, as it does not charge its participants. We do this because charging participants adds a barrier to entry that we don’t want to have, and only helps the people who can afford it, whereas our mission is to help as many people as we can. However, we are not simply activists, as rather than simply engendering change at some higher level we also work directly with those affected by autism.

So what are we? Well, in a recent sit down with Thomas Rollerson, who was the CEO of Dream Foundation for 20 years, he explained that the best way to describe us would be as “Social Entrepreneurs.” 

Unlike a normal entrepreneur, who seeks to create a business venture that generally follows the existing status quo, social entrepreneurs disrupt the status quo by creating an innovative solution to a social problem; in this case, helping adults with autism find more fulfilling work through pursuing their purpose. 

A social entrepreneur is effectively the blending of both an activist and a typical entrepreneur. We seek change, just as an activist does, but unlike a typical activist who demands change from the top down we make the change ourselves from the bottom up by providing a new innovative service, product, or approach to a situation that is effective enough to cause a widespread systemic change to the status quo. As an activist, we are first and foremost passionately devoted to change for those who are disadvantaged and marginalized, but our method is through innovation rather than through reform.

What Sets Spectrum Fusion Apart

It is this factor that I believe sets us apart from most other organizations, as well as what people likely misunderstand when they first hear about us. It might be easier for those we seek to reach out to trust us if we were typical activists. Activists tend to be more quickly believed than ‘businesses’ when they try and do good for a marginalized people because they tend to have more of a personal stake in whatever it is they’re fighting for, as well as asking for little in return from the marginalized group they champion save sharing in whatever benefits they bring about through reform. Meanwhile, a business or entrepreneurship tends to be looked at as wanting to make money first and catering to a market they can profit off of, even if that market could greatly benefit from the product.

A social entrepreneur, though, has the heart of an activist and the method of an entrepreneur. Our main goal at Spectrum Fusion is to bring about positive change for adults with autism, but rather than through reform by petitioning and rallying at higher-ups in government and education, we seek to lift up those with autism by helping them achieve their goals directly rather than through government intervention. In this way, we also don’t inadvertently step on any toes, accidentally disadvantage any other populations with sweeping reforms, and make fewer enemies. Furthermore, by providing a service that ultimately benefits everyone who needs help without inconveniencing anyone who doesn’t, we can bring the community closer together without any enmity between those with ASD and those without.

Time Will Tell

It is, of course, a great deal more difficult to innovate than it is to ask a higher power to cause sweeping reforms. Just like starting a business is difficult, starting a program like this is an astronomical undertaking and it will require a great deal of effort in the coming years to become widespread enough to reach everybody we need to. With hard work and dedication, however, we can make it happen, and in time hopefully, people will come to see that this isn’t too good to be true. 
 

Up and Coming YouTuber Josh Mitchell

Brick Building Fun

As we have with Sable in a previous blog, Spectrum Fusion continues to follow its Reactor Room participants even after they’ve finished the Reactor Room event itself. We saw that Sable had made great strides towards becoming independent after her event, and today we are going to look at another Reactor Room participant: Josh Mitchell.

Josh Mitchell is a thirty-something-year-old man living in the Houston area who has great talent in editing and video recording. Josh is an excellent editor with a keen eye for detail who has previously managed to edit several books, including the critically acclaimed Aspergers on the Inside. He was looking to expand his horizons even further into video editing, specifically so that he can continue to foster his own Youtube channel. Obviously, video editing is an entirely different field from book editing, but Josh has already made great strides into his efforts, with his skills improving even in the short time since his Reactor Room experience.

Josh is the manager and star of “Brick Building Fun;” a Youtube channel that focuses upon building Lego sets. It is a channel aimed mostly towards children but can be watched by anyone with a love of Legos and building. Josh also claims that his channel is also aimed to foster healthy aging in older persons interested in keeping their minds and muscle memory sharp and engaged, as well as those with physical disabilities who might be helped practicing the fine motor control needed to construct Lego sets. Josh also manages other Youtube channels as well, but wishes to devote most of his focus to Brick Building Fun.

Legos Are For Everyone

He has consistently managed to keep to a schedule of uploading videos twice a week, every Tuesday and Friday. He doesn’t limit himself to any one type of Lego set, having made videos about all sorts of topics at all sorts of skill levels. Nothing is excluded as the topics range from Batman to Pokemon to Disney Princesses and the set complexity ranges from incredibly difficult towers and cities to simple sets with less than seventy pieces.

What is perhaps most notable, though, is Josh’s production value for what few resources and budgeting he has. Every video shows a green-screened Josh in the corner of the screen, patiently reacting and instructing the viewer as they follow along, as well as edited in images of the instruction books to better help the audience understand what steps they need to take to complete their model, to a custom intro that plays at the beginning of every video. Every edit in these videos is made by Josh alone and helps to put his talent at video editing on display.

Legos Build Visuospatial Skills

“Legos get the wheels turning and keep the wheels turning across a lifespan,” Josh says. Research has shown this to be true. Children who use Legos show an increase in visual-spatial awareness and skills that are necessary in developing abilities in abstract thinking and mathematics. Josh hopes to be able to reach a wider audience and help bring the benefit of building Legos to a wider, more varied audience.

 

 

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The Complex Relationship Between Self-Awareness and Self-Advocacy

What Will the Neighbors Think?

Over my time here working with Spectrum Fusion we have had several conversations about how to encourage our participants to advocate for themselves. It is a persistent problem that hounds those with autism in general. Often, people with ASD are reluctant to put themselves ‘out there’ and speak out on their own behalf because they are afraid of what people will think of them and how they will be treated after it comes out that they are on the spectrum. The threat of stigma and ridicule paralyzes people into silence when it would be nothing but advantageous for them to advocate on their own behalf.

On the one hand, having ASD myself, I can see their point. Despite things slowly getting better for people with ASD, there is still a great deal of stigma against people with autism, and it isn’t helped any by the DSM-V lumping Autism all together into one single diagnosis, removing any and all medical distinctions between individuals with wildly different presentations. That, however, is a topic for another day.

There is still a fair amount of stigma against people with autism, and that makes it incredibly difficult for people who are already sensitive and emotional to advocate for themselves. Some employers are known not to hire people with disabilities because they don’t understand them and worry about how the new employee may act. Some may have the best of intentions trying to accommodate for people with disabilities, but despite their good intentions they begin to act overly gentle and awkward, or even patronizingly around us, thinking they must walk on eggshells and treat us with kid gloves. Some people are simply bigoted and dismissive of those with disabilities because they think them lesser.

The Need to Self-Advocate Is Essential to Change Perceptions

Unfortunately, this only makes the need for self-advocacy all the more critical. We can have people advocate on our behalf all we want, but if we cannot step up ourselves and prove that we can join society on a greater, more equal level, it will all mean nothing. If we cannot prove to society that we are worth their time, effort, and attention, then nothing will ever change. Perhaps the more kind-hearted among people will give us a little bit of investment out of pity, but nothing will ever change on a broader scale. What’s more, self-advocacy is not only needed to prove to people that we can engage with society on an equal, more meaningful scale, but it is also necessary to prove it to ourselves.

However, on the note of engaging with society, there is a huge, glaring red flag that must be addressed before we can simply start advocating for ourselves. Self-advocacy, you see, is a complex topic that must be broached with extreme care and cautiousness to avoid falling into certain pitfalls and only making things worse for ourselves. This is not a statement meant to frighten or discourage anyone from advocating for themselves, merely a plea that we should step lightly and consider the facts of our needs and position carefully before making any rash decisions. Indeed, while there are a lot of reasons that we should self-advocate, if we go about it in the wrong way the results can be less than favorable.

The point I am trying to make is that people must be thoughtful and careful as they make their arguments when they advocate for themselves, and they must be sure to advocate from places of strength and worth, rather than simply making demands out of some sense that they deserve ‘restitution.’ And though it may be surprising to those who are depressed about their disabilities, there are absolutely places of strength for you to take comfort in and advocate for.

Different, But Not Less

There was a time right after I was diagnosed with autism when I particularly hated a saying  commonly thrown about in the autism community, and that was that people with autism are “Different, but not less.” This was a statement that profoundly puzzled, and even to some extent infuriated me. Shortly after my diagnosis, as I was busy trying to parse through what my disability meant for me, I would become angry whenever anybody tried to comfort me with these words. To me, my diagnosis was a death sentence. It meant that I would never be able to socialize on the same level as other people. I would never be able to feel or think in the same way as others did, and would forever be separated from them because of it. My thinking and feeling were fated to be different in such a profound way that the layman, who would severely inhibit my job prospects and ability to form friendships, would forever see me as strange and off-putting. In essence, I felt I was doomed to be an overemotional, oversensitive ‘manchild’ for the rest of my years, never able to engage with the rest of society on a meaningful and equal level. How in the world, I asked myself, could that be considered anything other than “less?” And indeed, I lashed out at people who tried to use those words in my presence. I saw them as meaningless platitudes, with no value behind them other than to make me feel better despite my irrefutable knowledge of the truth.

And, to some small degree, I cannot say that I was 100% wrong about my feelings at the time. It is unlikely that I will ever be able to think or feel in the same patterns as most other people. It will probably be more difficult for me to make friends, and I’ll probably always be viewed as somewhat “eccentric.” However, the thing I eventually learned was that while what the thoughts I was having were not necessarily false, I did not see the whole picture. And once I was capable of seeing things from a wider standpoint, the statement “different not less” struck me in an entirely different light.

If An Average Person Is a Swiss Army Knife, A Person With Autism is A Specialized Tool

There is an analogy that I like: If your average person is a swiss army knife, then a person with autism is a specialized tool. Most people in the world are capable of multitasking to a high degree, including navigating complex social situations, which might be seen as the basic catch-all ‘knife’ found in a swiss army knife. It is only natural that human beings should be, on the whole, able to socialize with ease. Human beings, after all, are social animals. 

People with ASD, however, aren’t swiss army knives. They do not possess the ability to socialize or regulate emotions or break from certain ways of thinking that most people experience. However, unlike the rest of the world, people with ASD are the professional-level electronic screwdrivers, restaurant-quality corkscrews, master-tier woodworking tools, and high-end fabric shears of the world.

These tools are certainly different, but by no means less valuable. In fact, while they aren’t as versatile as a swiss army knife, if you want a job done right then they are far more valuable than such a jack-of-all-trades tool. Though this analogy may be apt, I am not trying to say that we should become narcissistic about this and think of ourselves as somehow “better” than people who aren’t on the spectrum. We are all individuals, and we have different and diverse stories, talents, and backgrounds, and none of us are worthy of scorn based on disability or lack of disability alone.

What I am trying to say, though, is that people with autism tend to hyperfocus and hyperspecialize. We tend to become incredibly interested in and proficient at a particular skill or field, at the expense of most others. One could perhaps see it as something of a trade-off: By becoming incredibly talented and proficient at one field, we sacrifice social skills, some thought, and emotional regulation, and certain levels of flexibility, among other things that commonly afflict people with ASD.

What this means is, with the right amount of self-discovery and introspection to help us discover what it is we are great and proficient at, as well some specialized training and education to help us become even better at our already natural talents, those of us with ASD could become true masters of our fields. We have the capacity, focus, and talent to become great at whatever it is we choose to do, and that’s worth something. Skill and talent is something that’s not only worthy of praise and highly regarded, but it’s something that society actively seeks out.

Speaking realistically, it is unlikely that every one of us will become some sort of great and famous mind lauded throughout history. We are not all cut out for that. What we are, though, are great and valuable specialists that are of use to society and industry at large, and it is not right that we should not be able to find a place in it. It is of disadvantage to us, and it is of disadvantage to the rest of society as well. Unfortunately, because of our lack of social skills, emotional regulation, and our eccentric behaviors, many people are put off by us, denying us a place at the table, and denying themselves of our specialized skills and talents.

And this is where I must start to rain on the parade that I have set up for everybody in this blog where I laud and praise the talents that I have written so far. For you see, one cannot necessarily blame the rest of society for feeling put off and nervous around us.

Time for Introspection

If you’re on the spectrum and are currently reading this blog, I’d ask you to take a moment to introspect and think for a moment about yourself and your personal history. Have you ever completely missed a joke or a chance to bond or a social cue during a crucial meeting? Have you ever accidentally gotten too passionate or angry or sad about something that came up in casual conversation? Have you ever had anything that could be described as a meltdown or a panic attack in a public place? Have you ever taken something too personally or too seriously and strained a conversation?

Earlier in this blog, there are several keywords that I’ve brought up that are very important. Firstly is that we need to engage with society on an equal and meaningful scale. I also made the point that we cannot become narcissistic about our abilities or that we should somehow see people who are neurotypical as less than us. Lastly, I pointed out that human beings are naturally social animals, and by and large, the average, neurotypical human being is wired to recognize and understand social situations naturally, and that it is not-unreasonably off-putting when another human acts in ways they define as strange. 

These and other concepts are ideas that we must take to heart as we recognize that, while ASD does have its benefits, it is still a disability; one that tends to affect our ability to socialize, regulate emotions, and has many other effects that can be naturally seen as off-putting to the average, neurotypical person. And there is no reason that we should think neurotypical people ill for that because human beings are social animals, and a human who cannot socialize on the same capacity as the vast majority of the world is curious, and sometimes off-putting anomaly. 
This is why I strongly feel that before we can begin to advocate for ourselves, we must strive to be aware of ourselves.

Perhaps you think that that is not fair, and just because you act in a way they perceive as “strange” does not mean that they should think you somehow off-putting or creepy. However, I would ask you to consider this: All of us, no matter how far we’ve come, is still tethered to our genetics and the baser instincts we developed as wild men when we had to hunt and fight to survive hundreds of thousands of years ago. In those days, ‘different’ was dangerous. Another human being acting strangely could mean any number of things. Perhaps they were sick with rabies, making them act irrationally. Perhaps they were of a rival tribe and would attack at the next opportunity. A neurotypical person being put off by a human acting in a way that is not “normal” is a perfectly natural and understandable response when you take into account the instincts that were genetically programmed into the human population over millions of years of evolution. It is an inescapable part of the human condition.

Is it fair? No, but life rarely is. And sometimes you draw the short straw. And trying to “make life fair” tends to backfire spectacularly. What those of us who drew the short straw can do, though, is better learn to cope with it, self-actualize, and even turn it into an advantage.

Before we can do anything, though, we must be self-aware. Self-awareness is something that must absolutely come before self-advocacy, and before you can advocate for yourself in a way that is meaningful and productive, and properly endears you to the rest of society, you must be aware of your shortcomings. You must also be aware of the way to properly advocate for yourself without putting yourself, as well as other people with ASD, in a disadvantageous, harmful, and even dangerous situation.

The Wrong Kind Of Advocates Can Give The Right Kind Of Advocates A Bad Name

We live in a time of great social unrest where the concept of advocacy has become something of a dirty word, and it is easy to see why. Every day you can turn on the news and see self-styled “advocates” screaming and ranting at people merely trying to go about their daily lives. People block streets, causing commuters who have nothing to do with the problem at hand to be late for work. They throw bottles and cans and sometimes even homemade firebombs at buildings. They riot in the streets, burning cars and breaking windows.

These kinds of “advocates,” who shriek slogans and demand restitution for perceived oppression and who commit violence have caused the very word itself to become one that makes people cringe. What’s more, these sorts of people tend to hurt their causes more than they help them. While it is true that some of the population will be frightened, bullied, and coerced into compliance by these despicable tactics, the vast majority of the public will even side against them on the very issues that they are trying to support .Effectively, these kinds of “advocates” poison the well against their own cause, and make it harder for legitimate, civil discourse to take place, which makes it harder for genuine activists to champion their cause.

Because let’s get one thing straight: These kinds of people are not advocates. They are knee-jerk protestors. They are perceived as whiny, demanding, entitled rabble-rousers. Unfortunately, people who act in this way are usually so entitled, coddled, and lacking in self-awareness that the only thing they can think of to do when they are faced with even the slightest amount of discomfort is to protest violently.

This is what we must not become.

More Introspection 

We have to remember that the world does not owe us anything. We are not an oppressed class being forcibly shunted off to work camps or prisons by an oppressive government. And while yes, stigma, bigotry, and misinformation among the public most assuredly exists and must be challenged, many of the problems we face as individuals, as difficult as it is to admit, are of our own making.

Consider your own personal history again. Remember that time you missed a joke or got too passionate or had a meltdown? Your disability was perhaps the underlying reason that it happened, but it was still your own doing that it happened. And while we can request understanding from the people that we affect during these moments, we cannot demand that they ignore it and that we be excused from consequences when we act in such ways.

Are you jobless and spend all of your time in your home away from other people? Do you have difficulty getting a job because of this social anxiety? Unfortunately, even if the underlying reason for this is social anxiety or ASD, we cannot simply demand that we suddenly be given our perfect dream job, citing our disability as a reason for why we should get it. 

We cannot demand that people kowtow to our every whim. We cannot order people to start walking on eggshells around us so as not to trigger us or set us off, and then demand people excuse our infractions when something sets us off, and we have a panic attack or meltdown anyway. We cannot demand restitution for oppressions that nobody has levied upon us but ourselves. 

Because although it is true that stigma, bigotry, and misinformation are things that exist, many if not most of the problems we face in our lives are of our own doing. We can blame a disability all we want. We can try and say that it is not our fault that we are disabled, and that may be true. But whether we have a disability or not, it is still our fault when we let our emotions get out of hand, when we make poor and irrational decisions, when we let our passions get to our heads, and when we melt down in public.

These tendencies that our disabilities have saddled us with -- overemotional tendencies, rigid thinking, propensity towards anxiety, social unawareness, and everything else -- these are character flaws. And unfortunately, their source is irrelevant beyond the fact that our disability makes them more chronic and makes it harder for us to deal with them than it may be for a neurotypical person to deal with theirs. This is why we can ask for patience when our flaws come to the surface, just as a neurotypical person might, but we cannot demand that our flaws simply be overlooked because ‘we cannot help it.’

Because the fact is that we can help it. We can be better than this. I’m not going to say that it’s easy, but through self-awareness and introspection, we can devise strategies and methods for us to help us get around the hangups and flaws that we have. It is difficult work. It is uncomfortable and stressful to think about, and it requires a lot of thought, time, and effort. And no, it isn’t fair that it should be so much harder for us than it is for neurotypical people. But that is how the cookie crumbled and nobody can turn back time and magically change it. It is our cross to bear and nobody else’s. And with enough time and effort spent introspecting and coming to understand your own shortcomings and flaws, we can build character and self-actualize to the point where we are less likely to fly off the handle around people, or sequester ourselves away in our safe spaces, or have panic attacks or melt down.

More than anything else, we must be self-aware. We must be aware of our flaws, recognize that they are our burden to take care of, that nobody else can be expected to deal with them for us, and work to fix them, or at least find new ways of coping with them, in the best way that we can. We must be self-aware and self-actualize.

Only then can we be trusted to self-advocate.

Are You Ready To Be An Effective Self-Advocate?

Unfortunately, this is already not the case. Many “self-advocates” with autism have not taken the time to introspect about themselves and become aware of their own flaws and how they are theirs to deal with. These people, just like the other faux-advocates of other causes, tend to make wild and entitled demands, have an immature “with-us-or-against-us” mentality, and demand that everybody else bear the burden of keeping them happy and content. They scream. They whine. They make outrageous claims like how NT’s (neurotypicals) are always somehow ‘against’ people with autism and how everybody who lacks the disability is actively oppressing them. They level insane accusations against well-intentioned academics who are actively working to try and help them understand their disability, claiming that their research is somehow harming them because it forces them to come face to face with their own flaws as people… which is of course uncomfortable and hurts their feelings. And they absolutely ruin the perception of people with autism among the general public.

These people are, sadly, rampant. It’s gotten to the point that when people think about autism advocates, these are the kinds of people that the general public tends to immediately think of. And you can bet your boots that this kind of supposed “advocacy” is having a terrible effect on people who are calmly and legitimately trying to champion the cause of aiding people with ASD, as well as greatly contributing to the stigma against us and harming the autism community as a whole.

Autism has become a joke on the internet. People with autism are portrayed as witless, bumbling, awkward losers with a complete inability to socialize, holed up in dingy, one-room apartment hovels and likely stroking a body pillow with a perverted-looking anime girl printed on it and whispering romantic nothings to it in place of real social interaction. And unfortunately, the immature actions of un-self-aware “advocates” only exacerbate the issue (as well as the DSM-V lumping everybody with ASD into a single diagnosis, but again, that is a topic for another day).

So how can we fight this perception? The first way is, of course, through self-awareness and self-actualization. If that stereotypical example I mentioned in the previous paragraph above hits a little too close to home, for example, how about instead of writing a nasty comment down below you instead take some time to introspect and think about why that is. Consider your life as it is and consider how you got to where you are. What choices or mistakes have you made in life? How could you be better in the future? What can you do now to change the course of your life? Can you come up with any coping mechanisms to help deal with your individual character flaws that sprang from your root issue of ASD? How can you work to be a better you?

And secondly, we can fight this perception through self-advocacy. Real self-advocacy.

Rather than reinforcing the perceptions of the public by demanding things we have not earned, calling everybody different from us an oppressor, placing the burden of our mental well-being on others, and demanding we be excused from our faults, we must show a different side of ourselves. We must highlight the benefits of having ASD.

Remember back towards the beginning of this blog when I highlighted the things about having autism that made us special. We are focused. We are talented. We are the specialized tools in a world of Swiss army knives. These are the things we need to highlight and the position from which we must self-advocate. Rather than attempting to pull our neurotypical peers down by demanding what we have not earned to compensate for our weaknesses, we must instead build ourselves up as people and then find ways to showcase our strengths.

This is the best way to get people onto our side and to change the greater perception of autism from “socially unaware, overemotional, panicky losers” into “hard-working, talented, focused, and skilled colleagues… who may or may not have a few eccentricities, but they’re aware of that and working on it.”

Part of being self-aware is not only recognizing your flaws, but also recognizing your strengths; the same kinds of strengths we talked about earlier in this blog. When you are self-aware, you can recognize your talents and skills. These are the things we have to offer society. These are the things that people will be incredibly interested in from us. These are our passions and purposes in life. And they are physically, tangibly worth something. If we can become aware of the strengths we have and then self-actualize by engendering their growth through specialized training, study, and practice we can become masters of our chosen fields. This is how we earn respect, friendship, and our place in society.

This is how we will change the greater public perception of people with autism. By individually working to build up our strengths and promote them to the public, rather than forcing the public to compensate for our shortcomings.

We Have Talents and Skills That The World Needs

Self-advocacy then, in this context, takes an incredibly different form than what the general public perception of “advocacy” has become. In this new form, the best way we can self-advocate is essentially by humbly, respectfully, and politely asking the world for a “moment of its time.” It is acknowledging the difficulty of living with autism and the character flaws the disability engenders, but assuring the world that we are working on coping mechanisms to curb those flaws and that we will do our best to minimize how often they appear in daily life, and then backing these promises up. And then, when the world does give us a moment of its time, it is proving to the world that our special skills are real. Our skills are unique, exceptional, and profitable, and they are worth investing their time and effort.

It will take time, and it will not be easy. The stigma and bigotry exists and it shall have to be challenged, but we must be sure to challenge it in a calm and respectful way that does not reinforce the current public perception of ASD through tantrums and demands. Give it enough time and patience and we will chip it down and wear it away. The process will be sped up as people continue to discover the hidden talents and skills of people with autism, working skillfully and professionally and contributing just as much as the swiss-army-knives of the world do. Slowly but surely the greater perception of autism will change.

It will take time. It will take patience. It will take blood and sweat and tears. It will take boatloads of effort, and it will be an uncomfortable, emotional, tiring process. But we can do it.
...But only if we have the guts to look inside of ourselves, grow as people, and resolve to do it right.


 

Along The Journey

What Happens After The Reactor Room?

At Spectrum Fusion we continue the work with our Reactor Room nominees long after their initial Reactor Room experience. We assess how they are progressing along with their options, opportunities, and connections that they have been offered, and we update them on new opportunities as we support them on their journeys to self-reliance. I myself have maintained consistent contact with many of the people I’ve met through Spectrum Fusion, Dr. Ham most prominently. In doing so, we have the privilege to watch many of the fascinating and exciting developments happening in the lives of the Reactor Room nominees, and celebrate with them in their successes

One of the members of the Reactor Room who has had an exciting journey so far is a young lady by the name of Sable. Sable is a twenty-eight-year-old young woman with multiple talents. She is intelligent and articulate, and graduated from the University of Houston with a degree in Psychology. She also earned her certification in phlebotomy. Currently Sable works part at an insurance company. Unfortunately, despite her degrees, certifications, talent, and intelligence, she has often been overlooked for various advancement opportunities, and she reported that she does not feel fulfilled.

Jewels 'N'Art by Sable

Sable is creative and artistic.  In fact, she started her own jewelry line and named her “store” Jewels ‘N’ Art by Sable. Sable creates home decorations and designs her own one-of-a-kind jewelry pieces. Over the years, she became very skilled at this craft.

Sable participated in the second Reactor Room event held on September 28th. There, it was determined that the best course of action for her would be to pursue her interests, both in the medical field and in jewelry making simultaneously. It would also be good for her to get out and socialize more amongst people that she felt comfortable with.

Since the Reactor Room, Sable has attended multiple events, including an art gallery showing/auction where a piece of art made by another Reactor Room participant was being put up for auction. Sable has slowly been growing more confident about ‘putting herself out there’, including making videos showcasing her jewelry. This continued exposure to other people will build her confidence over time.

Shadowing Opportunities

Another exciting development for Sable, however, is the establishment of shadowing opportunities. The Shadowing Program was devised to help adults with autism enter into workplaces without actually being employed by them, expressly so that they can observe and absorb information about the profession that they wish to enter into. By “shadowing” professionals who are currently working in their desired fields, they can observe without necessarily having to be employed by the organization, giving them a much greater chance at being hired in the future.

With the establishment of a shadowing program, Sable is now capable of observing at a blood center. There, she will learn more about phlebotomy and be able to see in more detail what will be expected of her when she eventually gets hired and what specific position most interests her. It will also strengthen her resume by allowing her to tell prospective employers that she has enough experience to be considered for a position. What’s more, this will also expose her to a greater number of people and allow her to work more on her socialization skills and anxiety in a safe environment so that she will be better prepared when the day comes she is eventually hired.

It was this concern that I myself held, and have heard expressed to me since, about joining Spectrum Fusion.

 

Sable interview .jpeg

The Reactor Room and Opportunity vs. Outcome

Earning our way in life

One of the more common concerns that I’ve heard from fellow high-functioning autistic people is whether or not they’ve truly earned what they have. To clarify, many people with ASD wonder if whether the things they achieve in life are actually the result of their own hard work, talent, and skill, or if they were simply handed “success” out of pity or obligation because of their disability. “Did I actually get the job because I was the best candidate out of the applicant pool,” for example, “or did I only get the job because I was some disability quota or because the people hiring felt bad for poor, little, ol’ me? If I were neurotypical, would I have stacked up to the other applicants?”

Some may read this and ask, “why does that matter? If you got the job just be thankful that you got the job and move on with your life.” There’s a pleasant simplicity in that notion that some may be perfectly happy to adopt, and there is no inherent problem with adopting it, but to a lot of people with ASD it reeks of naïveté.

In my previous blog, I wrote about the tendencies of high-functioning people with ASD to constantly question themselves. Indeed, this was the blog I was trying to write when the depth of that topic on its own rather got away from me.

It is a common anxiety for people with high-functioning ASD to worry about whether or not they’ve actually earned the things they’ve achieved. How much of what they’ve achieved is because they actually put in the time and effort and skill needed to achieve their goals, and how much of it was being handed things on a silver platter because of some quota or out of pity? This was a concern posed both by myself before I joined Spectrum Fusion, as well as another of our candidates whom I have had contact with.

The Quest for Independence

It’s a terrible feeling, not knowing whether you’ve actually earned your successes or not. After all, one of the main goals that most people with ASD expresses to have is that they wish to live “independently.” They wish to be able to make decisions for themselves, live ordinary, self-governing adult lives, and they want to achieve success through their own merit. How can we say we are living ‘independently’ then, if our successes are only gained not through our own merit, but instead through the initiative and influence of other people who simply take pity on us, or make allowances for us, for whatever reason?

I am reminded of a moment from another movie (as I often am, since movies are one of my “things”) as I write this: The 2011 superhero film, “Green Lantern.” A significantly worse film than Kung Fu Panda 3, but one with a singular moment that no less stuck out in my mind. There is a scene in the film where one of the villains of the movie, Hector Hammond, is given a job by his wealthy and influential father. Hector had previously assumed that he had received this job because of his own merit and talent, and is crushed to find out that the only reason he got the job was because his father pulled strings to get it for him. When he expresses disappointment about the situation, his father is dismissive and bluntly tells him that it’s simply “the way of the world.” This is one of Hector’s defining character moments and is one of the events that ultimately leads him down the path to villainy.

“Green Lantern” may not be the world’s greatest film (and in fact, it is an absolute dumpster fire of a movie), but since my diagnosis in early 2016, that moment has stuck out as particularly relatable in my mind. Nobody wants to be Hector Hammond (for more reasons than the obvious penchant for evil and the shockingly ugly giant head). Nobody wants to feel like their successes were arbitrarily granted to them for any reason other than their own merit. Those of us with ASD don’t want to be handed things out of pity, and we don’t want the whole reason that we achieve ‘success’ to be because of an aspect of our personalities that we have little control over and that many of us actively hate about ourselves (though you can perhaps see my previous blog to begin working on that).

It was this concern that I myself held, and have heard expressed to me since, about joining Spectrum Fusion.

Opportunity vs. Outcome

Before joining Spectrum Fusion, I worried that this was simply going to be another program that gave me hand-outs because I was disabled. I worried it would be some sort of ‘pity program’ that would basically hand me a low-paying, unenjoyable job of some kind, not because I earned it, but because a well-intentioned-but-naïve person thought they could help those “poor, unfortunate autists who need somebody to hold their hand.”

Having experienced being handed things based on my disability, I can say with great excitement that Spectrum Fusion is NOT that. Having been a part of the organization for about six months now, it is very clear that Spectrum Fusion is an entirely different animal, and the Reactor Room does not just hand out jobs on silver platters.

What the Reactor Room gives to its members is not outcomes, but opportunities. 

Heidi Ham and Spectrum Fusion have rightly identified that one of the bigger problems plaguing those with High-Functioning ASD is a lack of connections and know-how when it comes to entering the fields of our choice. This follows, as one of the most common issues that people with ASD have is that they are socially awkward and do not feel comfortable in social situations. This naturally leads to us not making many friends or contacts, thus we have fewer connections, and thus we have fewer opportunities brought to our attention.

What the Reactor Room does is give us a platform. It gives us a stage to stand up on in front of many potential contacts and connections who have the know-how to get into whatever our chosen field is and help us reach our goals; the keyword being help and not just granting us things willy-nilly.

Because our work is all our own. 

Promoting our Talents

One of the more positive aspects of having autism is that those of us with the disability tend to be specialists rather than generalists. To use a metaphor, if your average person is a “cheap swiss-army knife,” then we who have high-functioning ASD tend to be the high-end electronic screwdrivers, chefs’ knives, garden shears, and chainsaws. We are tools with a specific purpose that we do well, while everybody else is forced to multitask with lesser versions of those tools. The downside is that because we can’t multitask as well, we aren’t as able to go out and socialize and make these connections for ourselves.

Since joining Spectrum Fusion, I have been introduced to artists, craftsmen, photographers, videographers, and more, who were all plainly excellent at their trades. But all of these people, for one reason or another, found it difficult or downright impossible for them to make the connections and contacts needed to find a better outlet to utilize their talents.

This is the brilliance of the Reactor Room’s model. By spending so much time with every individual who joins the program and identifying their individual needs and talents, they are able to construct a panel of contacts unique to every member’s situation. From there, the member is the one who has to demonstrate just how talented and skilled they are. It is akin to a big talent show, where we can show off just how good we are at our specific talents and fields and prove to a group of influential people that we can do the job and do it well, and that we deserve to be rewarded for it; that we DO deserve success based on our merits.

Starting on the Path to Success

Since my experience in the reactor room, I have managed to use my newfound connections to get an article published in a magazine. This is a large step forward for me, as before this point I had previously been unpublished. The editor of the magazine in question, however, was not informed by my connection that I had ASD or any sort of disability. He agreed to publish my article not out of pity, but because he felt that my article was good enough to be published.

This is what the reactor room offers, and what sets it apart from other initiatives. It doesn’t offer immediate “success.” It offers the opportunity for success for people who previously had trouble finding opportunity in the first place; opportunity rather than outcome.

To make the actual, final leap to that outcome, well… that’s all on us. And we’re more than capable of making that leap.
 

Op Ed: On Questioning Ourselves and Finding Optimism in Embracing Our Disability

 William Purdy speaking with Dr. Heidi Stieglitz Ham preparing for the first Reactor Room in Houston, Texas

William Purdy speaking with Dr. Heidi Stieglitz Ham preparing for the first Reactor Room in Houston, Texas

Reflection

Sometimes I find myself questioning whether I will ever achieve any of the goals in life that I wish to achieve, or if I even deserve to do so; whether or not the problems that my ASD creates in my life rightfully preclude me from ever reaching success and happiness. I question whether or not I am a good person, if the antisocial, overreactive qualities that I have because of my ASD make me a close-minded, cantankerous grouch. I question whether the things I say are pushing away the few people I call friends, whether my opinions and passions are ‘acceptable,’ and whether or not life even continues to be worth living in the face of these vast, anxiety-inducing questions that (at least on the surface) don’t seem to have answers in my favor.

People with high functioning autistic spectrum disorder, you see, are often very quick to question themselves and every little thing that happens in their lives. Being as intelligent as many who are diagnosed with ASD are is akin to being told that an unknown-but-significant fraction of the things they experience in their daily lives are simulations or holograms or hallucinations. People with High Functioning ASD often experience themselves having something of a crisis of reality. “Is that person being rude, or am I just being overly sensitive” they may ask. “Was that statement I just made offensive even though it seemed so innocuous to me? Why do people look down on me for loving what I love when it seems so obvious why it’s worth loving? Are they just ignorant to the reasons the thing I love is so great, or am I just ‘being autistic’ again?”

Questions I’ve asked myself recently, for example, focus on who and what I would hypothetically be without ASD. Would I still like the things I like? Would I still be comfortable around the friends I’m currently comfortable around? Would I still write as well as I currently feel I do?

The answer is, of course, irrelevant and ultimately unanswerable. Autism is a part of us and it’s not an easily distinguishable part. Human beings are not a Jenga tower with clearly defined bits that are definitively ‘autistic’ that can be removed while the tower remains standing and can still be called a ‘Jenga tower.’ Rather, we are more like a chemical formula. Take the chemical formula to baking soda, for example, NaHCO3. All of the components of baking soda are ingrained with one another to make it baking soda. If you remove one of the oxygen atoms you get sodium hydrogen carbonite. Remove the Sodium and you get bicarbonate. Remove anything from the chemical formula of baking soda and you get something entirely different. Autism is a part of us and that is not only impossible to change, but if it were to change it’s more than likely that the resulting person would be so different from the original that they would be unidentifiable. It is impossible to know. 

So what does this mean for us? Well, if we cannot reject this part of us that leaves us with two options; ignore it, or embrace it.

Ignoring it may work for some people, but it would likely only work for the rare, lucky few who are so high-functioning that it can slip by unnoticed. Perhaps it might also work for those who are SO incredibly talented that, while it doesn’t slip by unnoticed, it becomes ‘forgivable’ in the face of their brilliant and incomparable talents, so that they end up described as not so much autistic, but merely ‘eccentric.’ Unfortunately, this is not the greater majority of us. While I like to feel that most people with high-functioning autism are ‘specialists’ where neurotypical folks are ‘generalists,’ the fact remains that very few of us are so talented that we can get by without addressing our disabilities in some way.

This leaves us with the last option; embracing our disability.

TURNING CHALLENGES INTO STRENGTHS

So then what do I mean about embracing our disability? What I mean by it is that we take this disability, this weakness, and turn it into an advantage somehow. This means something different for every individual on the spectrum, as we all experience autism differently and have it in different ways, levels, and intensities.

I recently found myself musing, somewhat randomly, about the children’s film “Kung Fu Panda 3.” While the movie was not my favorite of the Dreamworks trilogy in question, nor did I think it was ultimately the best written of them, I found one particular moment standing out. There is a moment, in front of a statue in a garden, that Master Shifu speaks with the main protagonist, Po, about how he wishes for Po to take over the dojo as Master. Po protests that he is not capable of it because he is not Shifu. Shifu replies by saying he is not trying to turn Po into Shifu, he is trying to turn Po into Po.

Po, of course, reacts with comical confusion at such a statement. “How can you turn me into me?” he asks. “I already am me.”

The meaning was quickly clear to me, however. I had heard similar statements made by other wise old mentors in other movies and stories in the past. I knew that what Shifu really meant by that statement was that he was nurturing Po to become “the best version of Po that he could be.” The movie later confirmed that I was correct on this front.

It was a moment that escaped me for some time afterwards until months later I found myself musing over the aforementioned hypothetical question of “who would I be if I didn’t have autism?” After realizing that I could not escape my disability, and even if I were somehow able to, I would be an entirely different person, I considered what it would mean to embrace my disability instead. That was when the moment returned to me. If autism is a part of me, and if I aspire to be the best version of me that I can possibly be, then I must find a way to make autism WORK... And not just work, but work FOR me rather than continuing to hamstring me.

Avoiding Narcissism

Now this does not mean becoming narcissistic about our disabilities. We are not ‘better than everybody else’ because our disability somehow makes us special. Our disability is just that; a DISability. Nor does it mean we use our disability as a crutch. It is something I see far too often (especially among younger autistic people) that they use their ASD as an excuse to get away with anything. “Oh, I offended you?” they say, “well you can’t blame me because I have autism.” Or, alternatively, “that thing you did offends me and I have autism so stop it before I melt down!” They use it as an excuse to control behavior and to shift any blame off of themselves.

Not only do I find this personally repugnant but I feel that it is intolerable behavior because it poisons the well of the beliefs of the common, neurotypical people who make up 98% of the world. The more people who act this way (and there are far, far too many people who act this way), the more people will see people with autism as nothing more than whiny, infantilized people who refuse to grow up and overreact to everything.

The Long Road Ahead

It is a slow and difficult process, figuring out how to make this seemingly lofty goal viable. Many of my autistic tendencies are things that seem to preclude my success. Antisocial behavior, oversensitivity to certain sights, sounds, and smells, and difficulty with understanding what may or may not offend my peers are all difficult things to make into rewardable behaviors. What can be done, however, is that checks and techniques can be used to limit these behaviors and keep them from becoming rampant. Meanwhile, other behaviors, such as intense focus, passion for certain topics and activities, and attention to detail can be fostered and propped up. One can train themselves to pay attention to the RIGHT details, focus at the RIGHT times, and turn their passions to their advantage.

I feel this is something that all high functioning people with ASD should do, as it can only benefit them in the long run, both in terms of their success and happiness and sense of self-worth. Take some time to sit down and reflect upon yourself; your behaviors, thoughts, attitudes, and everything that makes you YOU. What parts of you make you your own enemy? What behaviors do you have that are hamstringing you and keeping you from success and happiness? Many of these behaviors will likely be those things that define you as autistic. However, you should next think about what parts of you make you strong and what parts you want to encourage and continue to foster and grow, and you may find that many of those qualities can be described as ‘autistic’ as well.

It will be a long process, and it will not be easy, but there are enough success stories out there of people with ASD who hit it big that I am more than certain it is doable. We may not be able to get rid of our ASD, and upon reflection we may not want to. Who’s to say that if we were to somehow “get rid” of our ASD that we’d even be the same people we know ourselves to be; that we wouldn’t be changed in some unconscionable, irreversible manner. But though we can’t get rid of our ASD, we can damn sure whip it into line and make it work for us.

 

My Experience in The Reactor Room

 William Purdy speaking with venture capitalist, Mr. Kemal Farid

William Purdy speaking with venture capitalist, Mr. Kemal Farid

Reflection

As I sit here mulling over the past several months, I find myself reflecting on just how radically much of my life has changed. Having been asked to write about my experience with the organization known as Spectrum Fusion and their Reactor Room program, it dawns on me that in a very short period of time my life has grown to look very different from how it did just months ago, with the potential of further and even more substantial changes down the line. 

For those who are not aware, Spectrum Fusion is an organization created by Dr. Heidi Ham, with the goal of better finding a place in the world for adults on the autistic spectrum, and the Reactor Room program is a program through which Dr. Ham reaches out to the community to find solutions and prospects for adults with autism that match their specific personalities and talents. What is special about Spectrum Fusion and the Reactor Room over other programs for adults with autism is that it does not try to “train the adults with autism to not be autistic,” by teaching them “how to act” in situations they might encounter. It does not basically instruct them to “suck it up” and bottle up all their extreme emotions and reactions. Understanding the triggers for such emotions, and learning how to create environments that are best for individuals with autism are essential to the program. Spectrum Fusion recognizes that a mismatch between the job and the adult with autism only tends to succeed in creating an employed but profoundly unhappy adult with autism; one who is gainfully employed and making money, but is coming home exhausted each day with no energy to pursue any further social life, personal goals, or hobbies. These adults often end up depressed and even suicidal because they feel trapped. They feel caught because they cannot pursue any sense of personal fulfillment because it is too important to keep the jobs that they actively hate.

Dr. Heidi Ham recognized this and formed Spectrum Fusion to offer an alternative entirely based around that sense of personal fulfillment. What is truly special about adults with autism is that many if not most of them are profoundly talented at specific activities. These activities are often very valued in our daily life and society, though often seen unachievable due to the way that the autistic are shoved into roles that they hate and can’t escape from.

Spectrum Fusion seeks to rectify this by reaching out to the community through its reactor room program, identifying positions and leads that could lead to gainful employment in positions where the adults with autism feel comfortable and fulfilled. By reaching out to community leaders, entrepreneurs, and those in positions similar to those the autistic adult is interested in, they can identify paths and means to better help the autistic adult achieve those positions, or ones enough like it that they are satisfied. Effectively, the point of the program is to bring the community to the autistic adult in question and work out ways to help both, forming a symbiotic relationship between the needs and talents of the individual and the needs of the community, as opposed to simply shoving the adult into a job they may end up hating that makes no use of their talents and calling it a success.

What’s truly remarkable about the whole process in my opinion though, is just how in depth and caring it is towards the adults in question.

Spectrum Fusion

I first met Dr. Ham through a common acquaintance by the name of Dr. Kate Loveland, who is on the board of Spectrum Fusion. Dr. Loveland was my mentor during the LEND (Leadership Education in Neurodevelopmental Disabilities) program. When I was first introduced to the concept of Spectrum Fusion and Dr. Ham’s vision, I was immediately skeptical. To say that the program sounded too good to be true was a vast understatement. I was of the mind that it was probably a scam of some kind and, if I’m to be honest, I actually thought that it might be some kind of cult. Despite only having been diagnosed properly with autism about a year and a half ago, I had already been subjected to a “training course” that was entirely ineffectual and did nothing to help me as an individual. With that said, I trusted Dr. Loveland’s judgment and the fact that she was on the board of the organization convinced me to get in contact with Dr. Ham for a meeting.

To say the meeting was immediately rewarding is an understatement. Dr. Ham is an incredibly charismatic and kind person who clearly cares about everyone she meets and has a vested interest in adults with autism and bettering their standard of living. But what struck me, in particular, was the mere fact that Dr. Ham truly took the time to get to know me as a person.

In the previously mentioned training course, I never felt like the people who were trying to help me actually cared about me as a person. I was just another “adult with autism” that they needed to “help” by providing exactly the same advice and directions that they were giving everybody else in the course. Advice and directions, mind you, that did not apply to me or any problem that I really had. And the moment that the course started introducing things that might have been relevant to me specifically, the course ended. We were told that the program had concluded and shoved out the door.

What courses like this fail to realize is something that is repeated in the psychological community many times; that if you meet one adult with autism, you’ve only met one adult with autism. Every person with autism experiences their disorder differently. It is a disorder with such a loose set of requirements that having ‘autism’ can mean nearly anything for the individual experiencing it. Unfortunately, this hasn’t seemed to sink in for many therapists and instructors who are used to treating more concrete problems that have greater commonalities between the individuals experiencing them. It felt like the program I’d been a part of was trying to cast as wide a net as possible to try and help as many of us as possible, without realizing that autism is not a schooling fish. They might have helped a few of the people in that program with their advice, which seemed to center around helping those with the most stereotypical version of autism like you see in movies and television, but the rest of us, whose problems are more unique to us as individuals were left out in the cold. When talking with other participants in that program, none of the ones I talked to seemed particularly pleased to be there or felt like they were getting anything out of it.

This is what makes Spectrum Fusion so unique. It doesn’t try to save time by assuming everybody with autism has the same issues. It doesn’t gather large groups of people and give them blanket advice without any regard for the needs and trials of the individual. Instead, Dr. Ham met with me one-on-one and got to know me as a person. We talked and had conversations like normal people simply being friendly, like people simply getting to know each other. And through these conversations, my problems, dreams, goals, and needs came up naturally and organically.

Simply talking to me one-on-one and identifying my own personal needs and problems as an individual and not just another “adult with autism” already put Spectrum Fusion head-and-shoulders above my previous experiences but my expectations continued to be defied. We continued to meet, usually once a week (with phone calls in between) and continued to discuss options and potential leads. Most of these meetings were one-on-one, but sometimes more experienced people from the community were brought in to help further clarify what would be needed to try and achieve my various goals.

The Reactor Room Event

Then came the night of the actual Reactor Room event itself, where people were brought in from all over the community to help further identify paths and plans for me.To call this event humbling would be an understatement. I was an individual being focused upon by multiple people, all of whom sought to help me. It was a far cry from being part of a massive group being talked at in blanket statements by a single individual who was trying to “help” as many people as possible as quickly as possible and then get them out of there. Seeing all of these people there for me (as well as the one other person who was being aided that night), was intimidating, but in a very humbling and uplifting way. It was only a single night of the experience and only lasted for a few hours, but it made a vast impression.

Since then, multiple opportunities have opened up for me, and with the continued help of Dr. Ham, we are looking into and pursuing them. For the first time in a long time, I am hopeful and I feel like my life might actually have a direction again. 

Takeaway

If it is not clear, I would absolutely recommend that adults with autism and their families look into Spectrum Fusion and see what it can do for them. When I asked Dr. Ham if the process she’d gone through with me was the same process she intended to go through with everybody who joined the program, and she said that it absolutely was, that clinched it for me. I would not recommend the program if I felt I was special simply because I got onto the train early. It’s a daunting task ahead of Dr. Ham, but I feel if anyone can pull it off it’s her and the support network she’s built.