All parents of autistic children struggle to give our children the lives they deserve, but we struggle in different ways because our children’s support needs vary so widely. I understand this complexity at a deeply personal level, as my autistic son requires full-time care—and I also get it professionally, as an editor and community manager at Thinking Person’s Guide to Autism, where a dizzying range of autistic experiences passes through our forums. Among other learned truisms, I can tell you that the recently proposed term “profound autism” is not very useful to parents like me, or autistic people like my son. What parents of high-support autistic kids like me need instead is more awareness of and connection with the other communities who understand our kids’ high-support traits, like the disability and non-speaking communities—in addition to the wider autistic community.
It’s not surprising that parents are seeking to segregate their high-support autistic children. Parents like me often aren’t given good information about the disability diversity within the autism community, or how to support our autistic children who have speech or intellectual disabilities on top of their autism. Instead of feeling supported by the autism community, we often feel isolated when our autistic kids are all lumped together—even though our kids’ autism-only disabilities, like a need for consistency and sensory sensitivities, are indeed very similar. We often find ourselves looking at the general autism community, and getting frustrated because it includes and is led by people we perceive as having lower support needs than our own children (even though since every autistic person qualifies as disabled, every autistic person needs some kind of support and accommodations—and this is true even if a person is able to talk, go to a mainstream school, or work in a regular job). We might falsely believe that inclusive autism spaces can’t possibly serve us.
Also, when parents believe “profound” autism is a separate condition, their children’s illnesses, or common co-occurring conditions like migraines or Tourettes or anxiety can get overlooked, unaddressed, or written off as “behavior” or just “severe autism.” The parents get frustrated when approaches like Applied Behavioral Analysis, which ignores autistic needs in favor of conditioning “normal” behaviors, backfires. And because of the relentless negativity, fearmongering, and pseudoscience that seeps into media coverage of autism, “profound” autism communities are also often magnets for parents whose goal is to cure or treat autism, instead of understanding how to support an autistic child—especially if that child has other disabilities. And then when “nothing worked” because all of those parents’ kids are “still autistic,” and everyone is angry and feeling hopeless, the parents are left claiming that “no one” is addressing their “profoundly autistic” children’s support needs, so they need to create a separate category.
But if the parents of “profound” autistic kids would connect with all the communities that include their kids, like the disability and communication communities in addition to inclusive autism communities, they’d be so much better off. The non-autism disability communities, specifically, tend to be more oriented towards problem-solving for their kids’ rights and accommodations and medical needs. They get equally angry about the lack of support resources because there ARE a lack of support resources. But they also tend to view adults who share their children’s disabilities, and the value of their shared, lived experiences as the valuable resources they are, instead of rejecting crucial allies and supports.
Why is it so hard for parents of autistic children to understand which resources they need? One roadblock is a society that tends to view autism and disability as scary bad things, and see disabled people like our children as burdens. In addition, most mainstream autism resources were developed by professionals who haven’t gotten over the idea that disability is bad, or who aren’t part of the autistic or disability community, and who didn’t consult autistic people—so those resources tend to center on how to make autistic people easier for non-autistic people to live with, instead of focusing on autistic people’s happiness and well-being. And since a family is usually only as happy as its least happy member, and since most families are not given information about helping autistic people be happy, this means too many families with autistic members are not happy ones.
Parents who aren’t themselves autistic or disabled and who rely on these mainstream autism resources may therefore have no guidance for viewing their children positively. They may not see their kids as who they are, but rather as what they aren’t. They won’t have the lived context to teach their children self-acceptance or self-advocacy, which means their kids may not learn that they deserve and have the right to whatever accommodations they need. Again, these will not be happy families.
But if parents get their information about parenting autistic kids from the autistic community, they will find people who think that their kids are awesome, and deserve to be happy, and want their parents to feel the same way. The parents will learn about autism from people who had autistic childhoods. They can find out that the way their autistic child socializes is perfectly normal—for an autistic person—and that many social communication difficulties go both ways. They find out that the child’s strong interests can bring them deep joy, their repetitive movements can bring them peace, and their insistence on sameness can help them cope with an unpredictable world. They find out that things that non-autistic people consider “no big deal” are actually a very big deal for autistic people, like noises and flickering lights and consistency and processing delays and surprises. They learn to respect and work with the autistic child’s communication style, especially if the child uses echolalia, scripting, or alternative communication methods like typing or iPad apps. They will find out that autistic people consider ABA therapy a form of torture, and that at the same time some types of speech therapy and occupational therapy can be crucial.
When parents get information about their kids’ disabilities from the disability community, they will find people who think that their kids are awesome, and want their parents to feel the same way. They can also help parents understand that meaningful inclusion in school matters more than token mainstreaming without supports, that interdependence and being able to make choices matter more than becoming completely independent, and that being part of a community means increased personal safety while segregated living means increased personal peril.
If parents rely purely on the “profound” autism community, they are unlikely to find the resources their children need. So we need to spread the word that parents can get additional guidance from disability-centric organizations that also welcome autistic people, like Little Lobbyists, which focuses on children with complex medical disabilities; The ARC, which focuses on people with intellectual and developmental disabilities, or CommunicationFirst, which focuses on people with communication disabilities—in addition to autistic-led orgs like The Autistic Self-Advocacy Network, which advocates for autistic people of all abilities, and your autistic and non-autistic friends here at TPGA—all parents of high-support autistic children who are now taller than their mothers.
When parents find actually useful resources, the families and their children can be much happier. This doesn’t guarantee that everything will be fixed! But that is because our society does not yet provide the benefits and resources to support autistic children and families properly, and also because parenting is hard, and because all children have the potential to require more supports than their parents had ever imagined—regardless of whether they are disabled.