This post is an edited version of an email I sent to an autism mom I know who also works in the AS community.
After I hit ‘send,’ I realized that this is a topic I wanted to address publicly, but had always struggled to write about. I often find it easier to write when I’m writing to someone, instead of writing for an abstract, imagined audience in my head.
(This is part of why I’m so slow in updating!)
The context of this particular conversation was initially in response to this YouTube video, the struggles both practical and emotional of dealing with aggressive meltdowns, and the question of whether autism can really be seen as a “difference” instead of a “disease” when striving for acceptance feels like hindering progress.
In this new age of autism pride, we’re told not to think of autism as a disease. But that’s not always so easy for a family struggling to care for an autistic child who needs constant support.
Simply stating that autism is a difference isn’t enough.
It’s easy for autistics to say, because we can see it from the inside, but it’s not practical advice that a parent can follow just like that.
What other mindset could we have, other than the disease mindset?
I think a central problem here comes from something I’ve heard described by several parents with autistic children, which is the rigid, “spectrummy” mindsets of many autism families. Human beings in general tend to be prone to black-and-white thinking. It can be very difficult to see something—especially something like autism—in shades of gray.
While I’m 100% in support of the movement lead by autistics to reframe autism as a difference instead of a disease or a disorder, I do find the (understandably) black-and-white nature of this message difficult.
Pride and acceptance is essential to ensuring the happiness and success of autistic people, but we in the autism community cannot deny the disabling aspects of an autistic existence.
While autism is more of a difference than a disease, an autistic life often comes with some level of disability—although there are many enabling aspects of autism, and autistics have skills and abilities that allistics do not.
While I enjoy and follow autistic communities espousing mantras like “I don’t suffer from autism, I enjoy every minute of it!” even someone like me is disabled in many ways, and there are days and situations where I do suffer because I am autistic.
The way I see it, autism is not a disease.
Autism is a pervasive, full-body difference that involves varying levels of disability, depending on both the situation in which an individual is placed, and the expectations that are set.
I believe that autism is not inherently disabling, because with the right tools, environments, and expectations, any autistic can emerge from disability.
Disability implies an inability to function the way one wants to, to achieve personal goals. I know of many severely challenged, non-speaking autistics who do not consider themselves disabled, because they live happy lives and are able to achieve the goals they set for themselves.
But living with autism is to live in an intense, overwhelming world that does not organize itself easily, and that is a difficult situation to be in, especially for a child.
I tame my pitiful body to more withstand the environment. I assert my will on each sense. It takes a lot of energy and concentration. A lot of times I can’t do it still but I am getting a lot better. […] I try hard to calm my sanity each day. Anxiety from the world’s expectations of being normal each day awaken a fight or flight reaction. Sometimes I reach for clothes to pull. I don’t mean to hurt anyone but I sometimes act out of fear or frustration. Heading out of uncomfortable situations is another sometimes annoying thing I do. I really annoy people with my tendency to escape.
The mostly or completely nonspeaking adults I know who cannot live independently but who do not identify as disabled feel this way because they are able to feel at home in their bodies and happy with themselves. But that surely comes after a childhood of learning and struggle.
Even autism with severe challenges can be a difference instead of a disease, but this does not imply that it is necessarily easy to live with—as if all we have to do is just change our mindsets and suddenly everything will be simple and the right choices will be clear.
I still wish that documentaries like the one featured in the aforementioned YouTube video would display a wider range of familial attitudes towards autism. While many autism families indeed see their children as afflicted, and still pray for a cure, there are also families who accept their children for who they are, and reject the idea of erasing autism.
I don’t mean to say that the family featured in that video were somehow doing worse, or that their son was “worse,” than the children of families who see their kids as different instead of diseased.
The parents I know who have learned to accept their children as individuals, who will always be themselves instead of “normal,” still have children who throw violent, uncontrollable tantrums when life gets to be too much, or still need to wear diapers past a “socially acceptable” age, and so on. I think the difference is that they suffer less, emotionally, because they’ve stopped fighting against their children’s identities and hoping that one day “their autism” will go away.
After all, we can emerge from disability, but we can’t emerge from autism.
Therefore, when parents say,
I wish my child did not have autism,
what they’re really saying is,
I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.
And I do know that at the darkest times, when things feel hopeless, many parents have flashes of those thoughts, because they are human beings. These messages are meant to remind parents in those low points that their child is still there, even if they lose sight of them, and that child will remember what their parents say and think of them.
While it is perfectly understandable that so many parents of developmentally delayed children react to the idea of autism as a “gift” with shock and horror, it doesn’t mean that trying to accept these children for who they are is wrong.
Acceptance is not what hinders progress, even if other parents insist.
I think that this really depends on what kind of “progress” adults are looking for and trying to instill.
Non-autistic caregivers with autistic children often fall into the trap of believing that what progress should look like is a lessening of autistic “symptoms,” which implies that the child will look and act more neurotypical.
The problem is that autistic “symptoms” are not the symptoms of a disease, they are either coping mechanisms (stimming, perseveration, scripting, avoiding eye contact) or just a result of how their brain works (not reading sarcasm, obsession, a lack of central coherence).
There are programs that appear to bring about progress because they train a child to suppress their natural behavior (“symptoms”). And then they point to the child who no longer feels safe stimming in front of others and call that progress.**
In my opinion, what progress should look like is anything that better helps the autistic person in question to feel happy and comfortable with their world.
For most, this means learning to connect with and communicate with the people they love (whether through speech, typing, alternative communication systems, or sign language), managing their anxiety and sensory discomfort, and being treated like valued, beloved human beings.
Maybe they will stim in public forever! But that’s not the worst thing in the world.
I want to end with another quote from Philip Reyes, because I think his letter to his classmates after he attended his school’s Fall Fun Night is a really beautiful illustration of how real progress feels:
I liked Fall Fun Night. I surprised myself by not fighting accosting stimuli. Accosting stimuli are crowds, loud noise, sound bouncing off the walls, and racing motion. I am proud of myself for going. I decided to withstand it to dive into the world, daring to try not drowning in bitterness about being autistic. I am sorry I seemed to ignore all of you. I had to keep moving to save myself from going into sensory overload. That means I practically tantrum to get out of an overwhelming area. Listening to you talk to me is a delight to me. Healing talk is needed to help me begin to heal from my years of being treated like I don’t matter. Please don’t give up on me. A tap on my shoulder can help get my attention. We can ask Mr. B to help me type with you. I am glad to have you as friends. I am hoping to not ignore you next time.
** Because someone messaged me to ask for elaboration, I wanted to include a few links to other blog posts talking about the problems with compliance-based therapy, and why aiming to shape autistic behavior to look more normal (“indistinguishable”) is neither beneficial for the autistic, nor healthy:
- No You Don’t (Unstrange Mind) [if you are a parent and only have time to read one, this is the one to read]
- Indistinguishable From Peers—An Introduction (Radical Neurodivergence Speaking)
- ABA (Unstrange Mind) [warning signs to look for in therapy programs]
- More On ABA (Emma’s Hope Book) [includes memoir excerpts from an autistic boy on his experience with ABA]
- Touch Nose. Gummi Bear: What is ABA and why does it suck? (Love Explosions)
- My Observation Day (Love Explosions)