Adversity in the World of Autism Advocacy
By Kristi | Published | No Comments
I have spent much of the last 28 years advocating for my autistic son. He has limited verbal expression paired with an intellectual disability which makes self advocacy extremely challenging. As a parent not diagnosed with autism, equally challenging is attempting to navigate a world unfamiliar to me. Over the years I have never felt impugned for my efforts or berated for my neurotypical label. That is until recently.
While information is power, the abuse and misuse of power diminishes efforts, degrades acceptance and puts a very ugly twist on advocacy. It has come to a point where I no longer recognize the road let alone know where to turn. The map I knew rarely exists and in its place is one going in so many different directions it’s no wonder some of us are losing our way.
Of course 28 years ago, the internet was in its infantile stage. No high speed internet relaying information, everything good or bad at your fingertips in seconds. Social media? It was My Space. Facebook was not in existence, along with Instagram, Snapchat, Twitter, TikTok and the like. Texting was unheard of but we did have pagers. We still had landlines and email via AOL. Chat rooms were the forum for a variety of interests, even online games. No Google or AI. If we wanted support, it came in limited supply outside of family and friends. Maybe a parent or two at your local school and if you were lucky, a local ASA chapter.
Now you may be asking yourself, why the blast from the past? In my experience, the past is an important part of mapping our future. It seems that in recent years advocacy and support have taken an ugly turn. With so much progress one has to ask, are we really making any or have we hit a dead end? It begs the question as to why we see so much hostility in autism advocacy? Agree to disagree has become a battleground. Word choices, opinions, shared experiences, cries for help, interventions, education, alternative therapies, medication and communication options are often met with harsh criticism, judgement and even threats of violence. And the biggest battles of all, where your child or adult falls on the spectrum and whether you are autistic or not. It’s not even about being politically correct anymore. I have had autistics outright tell me to mind my own business and keep my mouth shut because I know nothing about autism because I am not autistic. However, I don’t see those autistics fighting for my son, because he falls on the forgotten end of the spectrum. The labels offend many, yet what is being done to promote awareness and understanding for those families and their autistic children and adults? The common goal is acceptance but even that is only achievable working together instead of tearing each other apart. Look at how many posts from parents and autistics are labeled anonymous for fear of retribution, judgement and at times outright hate speech or death threats.
So here’s the big takeaway and fast forward: twenty years from now, when those who have been caring, supporting and advocating for the forgotten are gone, what will the future look like for ALL autistics? Bash word choices, levels and descriptives all you like, but it will change nothing moving forward if only a select group of autistics lead the way for all. Go ahead and berate those of us trying to support our children and adults while ignoring the obvious or making judgmental comments or banishing us from your selective groups. It changes NOTHING. Attack the autistics who actually brave the backlash and fight for those who have been left behind. Go after parents like me, neurotypical, living and breathing just like you, doing our best but fearing the worst. We are well aware that we are different in many ways but where we are the same is in our passion and dedication. Like any parent, we will do whatever we can for our autistic children and adults. Accept us as we are, faults and flaws just as you want to be accepted. Teach with compassion not condemnation. Educate with an open mind. Support the journey and stop criticizing the path chosen. Recognize there are autistics that will never lead a life many lead and will require profound care, yes I said profound. It is not meant to offend but that word, as well as some others, shortens the distance for those with longer roads ahead. I must advocate for my son who does not have the ability to do so for himself and requires 24/7 supervision. The word “autistic” tells a very small part of what his daily life is like as an autistic. I just want him to have the best life possible and to be understood by others along the way. If a word or level helps him, then so be it—that is his autism.
While the advancement of the internet and social media has proved helpful, I’m finding it more challenging to embrace. Maybe it’s time to pull over and stretch my legs, enjoy the scenery and spend my time focusing on my son and his future.
Life is hard enough, no matter which road you take—on or off the spectrum. I see no point in taking routes that only make it harder.
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