There have been some recent news stories telling parents their child with autism is perfect, written from the perspective of an actual autistic person. In the autism community, we often say, “Nothing about us without us,” meaning any conversation about autistic people should be led by autistic people. Therefore, who better to comment on life with autism than someone who actually lives that life? It makes sense, but it’s not the whole story in this case.
There is another equally valid perspective. “Nothing about us without us” applies equally well to parenting, so a discussion of child-rearing might just as reasonably be led by parents. If the topic is parenting an autistic child, what better voices than autistic parents? There are a good number of us out there. I am an autistic person, son of an autistic father, and the father of an autistic son, who is now 30.
The message, “your child with autism is perfect,” is a wonderful expression of love and acceptance. If acceptance and love are the messages, no qualifier is needed. Yet it appears, leading readers to suspect the autistic child may seem “imperfect” in some way.
None of us are perfect, and we all seek love and acceptance. But when a child is born with significant disability, love and acceptance may not be enough. Parents see their children suffering and offer comfort. They may also seek therapies and treatments to relieve their suffering. Today, in the autism community, some parents have come under fire for choices they made in the hope of helping their children.
This issue is complicated by the fact that some parents embraced pseudoscience and cures that did their children harm. Others subjected their children to aggressive “normalization” therapies that left them full of anger and fear as adults. I used the past tense, but these things still happen today. That has made many in the autism community hyper-sensitive to talk of autism treatments or therapies. That’s hard for parents, most of whom love their children and want to do the best for them.
Many young autistic adults say, “We don’t need treatment or cure; we just need acceptance and supports to become part of adult society.” Autistic people who can make such statements are often in a position to achieve those goals, with the support of society. But we should recognize that some autistic people are too disabled to advocate at that level. Others feel disabled and want more substantial measures. Some people do benefit from treatment, and some treatments can be life-changing.
Adults know how important personal hygiene and social skills are. Some autistic kids have great difficulty learning those things; autism is, by definition, a social disability. To back away from such important learning when a child resists is to set the stage for adult failure.
Yet we must listen to autistic voices, and work to develop teaching methods that set kids up for success without leaving psychic scars. Always remember we are individuals. What works for one may not work for another.
When a person becomes an independent adult, they acquire the right to choose for themselves. The choice of treatments or supports, or not, is up to them. Parents must make those choices for their children. Parents of kids with significant cognitive disabilities may fear there is no good path forward.
What happens when a cognitively disabled child becomes an adult, and they cannot make decisions to live on their own? Who decides what constitutes "cannot?" The parents, or a court? The more disabled the person, the tougher the choices and the more supports are needed. There are no easy answers or snap judgments.
Some worry that their children will wander from home to be injured or killed. They cite the increased risk of drowning and accidental death for autistic people; statistics suggest their disability puts them at risk. Some autistic adults say any sort of confinement is wrong. That is a fine moral position, but what parent would allow a cognitively disabled child to run out the door and into the street, or into a pond?
The line between protection and restraint is seldom clear through the lens of social media posts. Society has traditionally trusted parents to make these choices in the best interest of their kids, with social services as a backstop. Today, anonymous voices on the internet seem to assume that oversight role.
I have met parents who live in fear of their aggressive autistic children, even as they struggle to find ways to resolve their aggression and provide them with a safe home. I have advised in criminal cases where autistic people murdered family members and even strangers. No reasonable person would argue that be met only with acceptance and support. Relief of aggressive behavior is needed.
Critics suggest aggression is a response to mistreatment, but science paints a much more nuanced picture from frustration to self-stimulation, with much that remains unknown. Suicide is nine times more common in autistic teens than in the general population. That is a problem that cries out for prompt attention, not mere acceptance.
Countless studies have shown that autistic children who are passive and/or nonverbal are at a greater risk for poor life outcomes. They are less likely to be able to live independently, form romantic relationships, or hold a satisfying job. Life expectancy for people who are seriously disabled by autism is significantly diminished. We should absolutely love and accept all children, but we should also seek to level the playing field for those born with cognitive disadvantages.
Recent studies suggest that diseases from epilepsy to heart attack kill autistic people earlier and in greater numbers. That should be a cause for concern for all of us.
I have become known as a supporter of the neurodiversity paradigm, which posits that a wide range of neurological traits and functions is part and parcel of our species. I also believe disability is a fact of life. We are all disabled, in various ways, at different points in our lives. Nothing in that worldview precludes working to relieve disability in lockstep with the march for acceptance, accommodation, and civil rights. We cannot forget that autism got its name, in the medical lexicon, because some of us are very disabled and challenged by other medical conditions. Acceptance is great, but there is a portion of our community needing far more.
With or without autism, your child is perfect. But don’t let that stand in the way of working to make our lives the best they can be, through love and acceptance, and also societal change, medical science, and engineering.