Parents of autistic children are at war. Autism tends to produce polarizing supporters, perhaps because of the spectrum of symptoms. One major argument comes from parents of “higher-functioning” autistic children advocating for neurodiversity and even the perspective of embracing autism as a “gift” while parents of more severely disabled or “lower-functioning” autistic children insisting that autism is no “gift” but rather something they would shed in a second if they were given the option. Unfortunately, this debate has been as much in the public view as information about the complexities of autism itself.
Why is the Autism Debate So Heated?
Some parents condemn the tendency to treat autism as something needing to be fought or “treated.” They also avoid using language like “the need to search for a cure.” They purport that this language makes autistic people feel bad about their autism, a part of their identity that they cannot eliminate. Many autistic people claim that autism is a part of who they are and that there is no person that exists apart from their autism. It follows that acting as if the autism is something they can shed is unrealistic and demeaning.
On the other hand, other parents are outraged by the call for such language, claiming that autism is no gift and that those who speak about neurodiversity and autism acceptance can’t possibly be speaking for their children, who exhibit profoundly severe symptoms. Most autistic advocates are verbal or able to communicate with assistive technology, and parents of children who do not have these capabilities claim there is no way for neurodiversity advocates to understand what their daily reality is and then push everyone to embrace autism.
I think there is a large public debate about this for several reasons:
- Parents are passionate about advocating for their children, so they care about how they are represented and want to speak out about issues important to them.
- Parents are worried their children will grow up thinking there is something wrong with them and that they need to be “fixed.” Parents fear their children will experience social isolation, depression, or even commit suicide.
- Parents fear their experience is being misrepresented and that they are alone in the world trying to navigate services and supports for their children. They want to show the world the side of autism that they (and their children) experience on a daily basis.
- Parents may worry that a “whitewashing” of autism will lead to less support for educational and therapeutic services, especially if the public perception doesn’t deem it a significant problem.
- Parents also worry that a positive view of autism will lead to a pubic perception shift that may defund important autism research in favor of programs aimed at promoting neurodiversity and autism acceptance.
- At least for some people on the spectrum, talents and gifts may not be realized until the teen years or beyond, and significant sensory issues do not improve until later in life; therefore, some think it may be premature for parents to assume their children have no skills or no future in a neurotypical society.
- Too little is known about autism. Because intellectual disabilities can exist alongside with autism in the most disabling cases, it is difficult to parse out specific symptoms, and the label of autism tends to get wrapped up and blamed for what may be the workings of a complex group of disabilities. But this isn’t always be the case, and because autistic people present themselves so differently (whether they have a single diagnosis of autism or multiple disability labels), it is difficult to discuss them accurately with the same rhetoric.
A Defense of Neurodiversity Rhetoric
I wrote a previous post about Neurodiversity Opposition and finding peace within the neurodiversity debate. The neurodiversity movement is led by autistics who are verbal and articulate or at the very least able to communicate in writing; however, I don’t think this fact alone should dismiss the rhetoric entirely for a few important reasons:
- Everyone is entitled to defend and advocate for their children in a way they determine is the best fit for the successful development of their children. If a family has a child who is less affected by autism and finds the approach to treat autism as completely acceptable or even a gift, then I think those parents have a right to raise their child this way and they shouldn’t be condemned for doing so by others who do not know their child. On the other hand, if a parent of a significantly disabled child realizes that the only way to advocate for that child is to fight for a particular treatment or approach that completely eradicates the most severe symptoms (and chooses to discuss that disability as something they want to be rid of), I think it is unfair for another parent who has no understanding of the other parent’s life or child to condemn him or her for feeling that way.
- The neurodiversity approach can truly help some autistics live more confident and successful lives. They can gain confidence in requesting accommodations and ultimately be more productive members of society. I think if this approach can have a significant positive benefit on some members of the autistic community, it is definitely worth pursuing.
Below is my list of advice for anyone trying to find peace within the public debate about autism:
- When possible, listen to what autistics are saying about autism. There are many verbal and nonverbal autistics who advocate for neurodiversity and autism acceptance, for example. And others despise the movement. Even if we don’t agree with their opinions, I think much can be learned from just opening up our minds and learning about their experiences instead of assuming we are always doing and saying the right thing.
- Try to respect every parent or autism analyst/advocate. Each person’s view may be coming from a completely different experience with autism. Try not to always assume they are speaking for or about your child and instead try to understand what they are living and why they believe what they do.
- Understand that often the most polarizing viewpoints get the most public attention. This is not the majority. Most neurodiversity advocates do NOT condemn autism research and therapy, rather they are focused on accommodating for autistic people in ways that encourage self-confidence and societal acceptance. Additionally, most parents of less disabled children assert or assume that their particular approach to autism parenting is appropriate for a child who is severely disabled. The reality is that most autism advocates reside somewhere in the middle. Yet sometimes the craziest of both sides are the ones who get the attention.
This blog is focused on offering useful tips that help autistic people NOW, and a neurodiversity approach has been certainly helpful for some. I think it’s fair to admit that it is helpful to some but not all; however, let’s acknowledge the differences where they exist and not demand one group of people abdicate an approach that is particularly helpful for their children.