The Importance of Educating Others: Making a Difference, One Brain At A Time

As you all know, I've spoken numerous times on this blog about the problems inherent in the mainstream media's understanding of Autism Awareness Month. The focus on curing, the pathologizing of personality types, and other such issues are just a few of the many facing those of us on the spectrum at this time of the year. What I haven't touched very much on, however, is simply how little real understanding there is among people. Indeed I've found that, despite everyone being so very terrified of Autism, many don't even really understand what it is and what the best ways of working with it are.

Recently, I was visiting my mom's side of my family in Kingston, Ontario and while I was there, I had an opportunity to talk to Kingston's M.P.P. (Member of Provincial Parliament for you non-Canadians out there)'s aide about my concerns over some of the provincial government's new Autism spending priorities. My cousin is also Autistic you see, and he felt the need to go provide a real human face to the whole thing. Naturally, I enthusiastically tagged along. While there, I took the opportunity to explain my concern over a recent image released by Ontario's provincial government in honour of Autism Month encouraging people to “light it up blue.” I talked about how Light It Up Blue is a propaganda campaign promoted by Autism Speaks, how it undermines the ability of those of us on the spectrum to speak and exist for ourselves, and how otherwise problematic the campaign is. I even suggested that the government use “Red Instead” and “Neurodiversity Month” in place of Light It Up Blue, since they are more respectful of the agency and rights of Autistics. Well, an amazing thing happened; the MPP's aide not only listened, she smiled in approval and understanding, as if a rainbow-coloured, infinity-shaped lightbulb had gone on upstairs. She thanked us both for the input and told me she had never considered what I had said before but that she'd get right on bringing it to Sophie (the MPP)'s attention.

I had made a difference; and it felt amazing!

The whole thing really drove home for me how little most people know about Autism. Granted, we've all heard the word, seen the propaganda, and probably all either know someone on the spectrum or are there ourselves. For most individuals, however, that's where it ends. The reason why most people think Autism Speaks is a great and charitable organization, for example, is that there is a precious lack of understanding. This is of course, not helped along by the fact that most information about Autism is presented by clinicians, politicians, parents and charity groups, with most of Autistics' actual stories being drowned out by these voices. It's a frustrating dilemma because most would probably turn wholesale against the mainstream understanding of Autism if only they knew better. This isn't meant as condescension; it's merely a fact.

There is a common idea among activists that it shouldn't be the responsibility of the oppressed group to explain themselves and educate others. While I understand the sentiment behind this, I don't find its fair nor applicable in the case of the Neurodiversity movement precisely because of this lack of information. While its true that we shouldn't HAVE to explain to others what its like living on the Autism Spectrum, the reality of the situation is that we often must. After all, if we don't, who will? If those of us who are neurodivergent don't speak up and contribute our human stories to the conversation, then the discourse will continue to be dominated by researchers, clinicians and parents' groups. The fact is, most people do want to help and meet us where we are, but we first need to help them know exactly where that is. Education is an essential part of improving the world for those with ASD and other neurodivergent conditions. It's the only way we can fight back against all the lack of understanding and actually build a world that is fair to everyone no matter the circumstances of their birth.

In the words of Peppy Hare from Star Fox (because it's kind of become my obsession right now), “Do a barrel roll,” educate others, and keep fighting the good fight!

Yours in Diversity,

Adam Michael

"Neurodiversity Month": Why "Autism Awareness" Just Doesn't Cut It Anymore

Ahh springtime. The sun is shining, the temperature is rising, and if you're Canadian like myself, you've probably just survived Second Winter (seriously, good on ya mate). It's the time of the year when everything seems to be waking up and things are beautiful. There is, however, another reason this part of the year is meaningful, especially to those of us on the Autism Spectrum and our allies. April is, after all, traditionally known as Autism Awareness Month, and it's that time during every orbit of the earth around the sun when all those who care about Autism choose to show solidarity. Sounds good, right?

The problem is, as both a yearly phenomenon and a movement in general, Autism Awareness doesn't really cut it. It is a cause that dates back to the first parents' movements centred around Autism, and it has the backing of big organizations like Autism Speaks, but the issue is that none of these groups really put Autistics first. Parents' groups are, understandably, focussed on navigating the challenges of raising a child with Autism, and Autism Speaks has a whole host of problems that would take an entire blog post to fully articulate. Despite having honourable intentions, both groups unintentionally (perhaps intentionally, in the case of Autism Speaks) perpetuate the same message; that Autism is a tragedy in need of eradication. Nothing could, of course, be further from the truth.

There is an important saying among Autistic self-advocates that there can be "nothing about us, without us," and it is the violation of this principle which is at the root of all of society's misunderstandings of Autism. People are inundated with clinical facts and statistics about various Autism Spectrum conditions that range from true-yet-overly-simplistic to flat out wrong, and yet not many organizations that claim to fight for the welfare of Autistics actually seem to care enough to consult those of us with first hand experience on the subject. If self representation is a key cornerstone of any civil rights struggle, then it is an opportunity many of us are denied in the mainstream Autism discussion.

Because of this, I'd like to propose something on this blog. Rather than calling this Autism Awareness Month, let's rechristen it "Neurodiversity Month" instead. We would of course still welcome all of the support and shows of solidarity put forth by our allies and friends, and we would still encourage the discussion of best practices regarding working with Autistics and living with Autism. The chief difference would be that, rather than let other organizations define our struggles and triumphs for us, we will do it ourselves. Neurodiversity Month represents us taking back the month and fighting for our own self-representation on this issue, and it's essential. There will be no talk of cures and eradication, only love, acceptance and support the way it should be anyway. Basically, much like June is LGBT Pride month, I propose we make April ours.

I invite anyone reading this blog to support this initiative. Let's retake the month together, and give all of those on the Spectrum a chance to advocate for and represent themselves. Our Facebook page will have custom banners and profile pictures available. I urge you to use them throughout April to show your solidarity and support, not just for Autistics, Aspies and other Neurodivergent folk, but also for our right to be ourselves and speak for ourselves, our struggles and our triumphs in this world.

As always Yours in Diversity

Adam Michael

Why I Fight. (or why I'm Not Ready To Make Nice)

As I'm sure many of you are aware, next month is Autism Awareness Month. As such, I'm bracing myself for the flurry of Autism-related posts flooding my social media feeds over the next 60 days or so. In the past, I've been fortunate enough to be surrounded by people who have been very supportive of Neurodiversity and not thought less of me for having Aspergers. Sure, I've come across ableist comments (which as you can imagine I have quickly crushed), but in general, I've always been able to look at April and consider it “Neurodiversity Month” because of the positive humans I seem to have surrounded myself with.

Except it isn't Neurodiversity Month. Not really.

I came to this realization a few nights ago while talking to my friend, fellow Aspergian, and fellow Neurodiversity blogger Steph Diorio on Facebook (check out her awesome blog here at http://aspergersillustrated.blogspot.ca/). She had shared a video about how best to support the Aspies in one's life during a hard month such as April. It brought up the very real fact that Autism Awareness Month isn't about us; its an ableist attempt to talk about cures and eradication of the 'awful tragedy' that is Autism. Frankly, its insulting, and not long after watching this video, I experienced all of this myself first hand. I had to interview my aunt for my book, and while I gained lots of useful information, I also experienced ableist condescension in the process. During my conversation with her, she implied that I was too stubborn and immature for my age, commented on how far I had come and how well I had done (while conveniently leaving out “for someone with Aspergers”), and asked if I shouldn't maybe seek professional help to assist me in managing my “disorder” in adulthood. Nevermind the fact that I'm employed, have a social life, and have earned three university degrees. Needless to say, I was livid, and my temper flared. It took all my strength to keep it contained within until I followed the obligatory social protocols and promptly left her house.

The funny thing about this experience though, is that while yes, I was and am angry, it also led me to remember exactly why I bother with all of this Neurodiversity stuff to begin with. You see, in a way, organizations like Autism Speaks and people with attitudes like those expressed by my aunt are only symptoms of a larger problem; institutionalized ableism and discrimination against those deemed “disordered” by the rest of society. Until society itself changes its attitudes, we will always have ableist discrimination against those on the Autism Spectrum and anyone else who dares to be different from the norm. People like my aunt are part of the problem, and they are the very reason why I started this blog, why I'm writing my book and why myself and countless others continue to care about changing all of this. As with feminism's battle against patriarchy, however, opposing people individually would be akin to cutting off a tentacle, when what we need to do is take down the whole evil boss monster. (+1000 XP if we do!)

So this is why I fight. I fight to make the world a better place for those who are neurodivergent. I fight to end institutionalized ableism against those who are different. I fight to challenge the pathologizing of personality types and the medical model of psychiatry. I fight for those who are nonverbal and cannot fight for themselves. Most importantly, I fight for the right (for myself and others) to exist free of condescension, pity, judgment, and loathing by those who refuse to see our common humanity.

And until we have truly accomplished our goals and banished all of those things in favour of building a more compassionate world? I'm not, nor will I be, to quote the Dixie Chicks, “ready to make nice.”

As always, yours in diversity,

Adam Michael