Because I will be writing about autism a lot on this blog, I want to be up front about where I stand on many common questions.
Who in your family is autistic?
My son was diagnosed in February 2013, just before his fifth birthday. My husband, daughter, and I are all neurotypical, although with our own sensory sensitivities, social awkwardness, and other quirks that suggest that the apple doesn’t fall far from the tree.
Is it correct to use the term “autistic,” or is it appropriate to say “person with autism” because they are people first?
When my son is old enough to have a preference on terminology, I’ll defer to his wishes. Until then, I use the adjective “autistic” because that is what many autistic adults prefer, describing autism as an integral part of their identity rather than as something that can be removed. This blog post by an autistic adult sums up that persepective perfectly.
What’s this about autistic adults?
There are many, many autistic adults, including some fantastic and insightful people who write blogs, author books, or run Facebook communities to share their experiences. Since my son was diagnosed, the perspectives of autistic adults have been among the most useful resources for helping me to understand and support him. Knowing that people who face some of the same challenges as my son are leading happy and fulfilling lives as autistic adults has also helped me reject a lot of the negative thinking and messages about autism in our society.
Do you wish for a cure for autism?
No. I wish for my son to gain skills and coping strategies, but I don’t want to change who he is. Autism is part of who he is, and he is awesome. He needs support, accommodations, and acceptance. I also fear that a “cure” for autism would ultimately make it so that people like my child would never be born, and the ethical ramifications of that prospect are chilling. The world is a better place with autistic people in it.
What about functioning labels?
I don’t think they’re very useful for describing anyone. I suppose you could say that my kid is the lowest functioning high functioning kid you would ever meet, but that’s pretty meaningless, isn’t it? Labelling someone “high functioning” can dismiss their very real challenges, while labelling someone “low functioning” can dismiss their equally real strengths and potential. Functioning labels seem to be a shortcut for determining whether someone can talk and accurately convey their intelligence, so it’s more appropriate to just specify those traits. My son is super verbal and very smart, but he has a lot of challenges and needs a lot of support as well.
Do you support Autism Speaks?
No. Their rhetoric of painting autism as a burden and a tragedy is extremely harmful to my son and other autistic people. Only 4% of their budget goes toward actually helping autistic people. They do not include autistic people in any of their decision making, and seem to only represent parents and grandparents of autistic people who wish they had different children. I found this post very informative in outlining many of the objections against Autism Speaks.
Do you believe vaccines cause autism?
No. Studies of millions of children have not found a link between vaccines and autism. And suggesting that autistic people are damaged or poisoned by vaccines makes it more difficult for them to find acceptance and respect.
Have you tried the GFCF (Gluten Free Casein Free) diet?
No, but there have been weeks where we’ve essentially tried the anti-GFCF diet, or what I call the All Mac and Cheese diet.
Do you believe that autism is all rainbows and unicorns?
There is a false dichotomy in the way that many parents and others talk about autism. Either we talk about autism as a tragedy, which leads to demonizing autism and dehumanizing autistic people, or we are living in some fantasy world. Either we tell the hard truths about how autism ruins lives or families will never get the supports they need. I reject this way of talking about autism. Autism is a disability which is much, much harder for autistic people than it is for the rest of us. When we talk about how hard it is for parents of autistic people, or how much money autism costs, or other negative messages that depict people like my child as burdens, it’s harmful for autistic people. Autistic people need help because they have potential, not because they’re broken. Families of autistic people need support because we are doing hard, rewarding work that is sometimes more than we have the time, energy, knowledge, or resources to do alone; we don’t need support because our lives are hell.
Autism also makes life enormously interesting and often fun for my son and for the rest of us. Autism creates gifts as well as difficulties, and we neurotypicals are all better off learning from (and alongside) people who can have such different perspectives and approaches from our own.
Life is hard and we do need support. My family needs more support than it gets right now. But having a hard life doesn’t mean it’s a bad life. Having to work hard can make life more meaningful and rich. I don’t hate autism. I choose not to dwell on the negative. I’m not going to destroy my son’s self-esteem by talking about how hard he makes our life or how I wish we could do “normal” things. We can choose a different way of looking at our life.
Are you an Autism Warrior Mom?
No, I’m much more of an Autism Pacifist Mom. (Is that a thing?)
Where did the name Unlikely Kids come from?
When my son started first grade, he observed that he was different from his peers in one way, and called himself an “unlikely kid.” That phrase resonated with me in terms of both of my children. They are different from other kids, due to autism and many other reasons, and it does seem like we’ve ended up in an unlikely and unexpected place in life. We are embracing our differences and the unlikely paths we’re taking, and we love our life together.