I’ve run into a curious phenomenon in my online life as I discuss autism and parenting, and parenting autistic children, in various groups and support circles and Facebook pages. If it happened once or twice I might think it was just a miscommunication, but it happens over and over again and so I think it actually means something.
When I describe my autistic son Charles, his interests and his creativity, his close bond with his brother, his independence and strong sense of self; when I describe the way we are raising him, without punishments or gold stars or behaviorism, without screen limits or set bedtimes or mandatory chores, without coercion; when I describe how we are parenting our autistic child, without professional therapies, without strict schedules, without public school, without using physical restraints during meltdowns unless absolutely necessary and that’s rarely necessary; when I refuse to expose his most difficult moments in public forums or offer support to parents who demean and ridicule and degrade their autistic children online; when I describe how he is thriving and happy and learning all the time; when I describe the way my husband and I accept and celebrate his unique self, people make this assumption:
Oh, well, you obviously have one of those “high functioning” kids. You obviously have one of those kids who go to mainstream classrooms and are “just quirky.” You obviously have never dealt with violent meltdowns. You obviously don’t know how hard we have it. Obviously.
Or, some say it in a nicer way. Like, oh yes, my gifted son who has Asperger’s is just like that.
In either case, the nasty way or the nice way, people are making the same assumption: only a child who is highly verbal and not too different from typical can be parented without punishments, can thrive without therapies, can be raised with acceptance and trust.
Only a “high functioning” autistic child could be accepted and celebrated in the way you, Meg, are describing this boy.
Every single time, I feel a sense of emotional whiplash. I never see it coming and so somehow it feels like a fresh sting each time someone assumes they know what this boy that I love is like.
The fact is, they assume wrong. I categorically reject functioning labels, but I know what those people are picturing. I’ve met those kind of autistic kids who might (or might not!) pass as “just quirky” in a mainstream classroom, and they are great. I was one of them as a kid. But Charles is not. If he went to school, he would have an IEP and would need substantial support. I don’t feel it’s accurate to call him speech delayed because I see his speech as being more just on a spectrum of normal autistic child’s language skills, but suffice it to say that he would be considered significantly delayed by mainstream medical/educational standards. He would not be diagnosed with Asperger’s if Asperger’s were still in the DSM (he does have a formal autism diagnosis as of May 2015). He is five years old and can write a few letters on the rare occasions he’s tried, but probably is dysgraphic and certainly is not hyperlexic. He is, according to the child psychologist who diagnosed him, “right in the middle” of the autism spectrum, a description that to her credit she also said we shouldn’t ascribe much meaning – and again, I don’t at all believe that trying to grade an autistic person’s “functioning” levels is either useful or respectful, BUT, to those people who assume I am talking about a child who might appear to be “just quirky,” I can assure them that is not at all the case.
None of that really matters, though I am always tempted to explain how wrong they are about what they assume. No, what really bothers me is what that assumption means.
I don’t think people are drawing this connection, and when I draw it for them they get angry. But what I hear them saying is, only a child who is highly verbal and highly intelligent could be trusted with that kind of autonomy. Only a child who is very close to typical could thrive in this world without therapies to make him seem less autistic. Only a child who never has physical meltdowns could be parented with soft compassion rather than force and punishment.Only a child who isn’t that disabled could be parented with that much acceptance and love. Because if my child were more autistic, I would celebrate him less. Obviously.
I am not exaggerating or being dramatic when I say that that kind of thinking is the path to abuse and even filicide for disabled children at the hands of their caregivers. I’m sorry if that sounds harsh, except – I’m not sorry. Because I think it’s important we realize it now, instead of lamenting down the road when another autistic child is abused by a special education professional or killed by a parent, that we wish there was something we could have done to stop that.We can pause now to call out this chain of thinking that goes: “high functioning” or less disabled = acceptance and celebration, but “low functioning” or more disabled = hardship and tragedy.
When I see that prejudice in action, and call it out, and warn people that that way lies child abuse, the reaction is not pretty. The worst things that have ever been said to me online have been said to me in response to me telling parents that it’s not okay to demean autistic children. And I’m not the only one who receives that kind of hateful backlash, far from it. It touches a nerve.
One of the common criticisms of people in the autism acceptance or autism rights movements is that we celebrate autism too much and never acknowledge the downsides or the hard stuff or the real disabilities involved.For one thing, I find that notion a little absurd since the mainstream conversation about autism is saturated to the point of dripping with stories about how hard it is (for the parents of course) – you can hardly throw a virtual stone without hitting a massive online forum dedicated to letting non-autistic parents air their grievances about their autistic children.
But the other point I want to make in response to that criticism is, yes we do acknowledge the hard stuff, just not, ever, in a way that is disrespectful to autistic people. The word Respect was included as part of the title of this blog because we, the group of authors, felt that respect is a vital part of our mission in parenting our autistic children and in writing about our journeys.
I have personally built up a wonderful support network online made up of non-autistic parents who are parenting autistic children with acceptance and respect, and autistic parents doing the same, and also autistic people who don’t happen to have children. And we do talk about the hard stuff sometimes when we need support, whether that’s our own personal challenges with being autistic in the world, or with parenting our autistic kids.You just might not see us doing it, if we don’t know you that well, because we value our privacy and that of our children, so we seek out small, safe spaces in which to be frank, or we talk privately. It’s not about being secretive, it’s about being respectful and always deferring to the privacy of the autistic person who is struggling. And that goes for our non-autistic children too, for those of us who have them. Not to mention our spouses (autistic or not), for those who have them.
Everyone is entitled to privacy and basic respect – so no, you will never see me publicly venting about how difficult it is for me when my child has a meltdown. That doesn’t mean he does not have them.
And all people have a right to be accepted as they are, celebrated for who they are, offered compassion and understanding, entrusted with bodily autonomy, and free from external manipulation and control. Being verbal, intellectually gifted, and able bodied are not the prerequisites to basic human dignity. Just being human is enough.