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.