There’s No Such Thing As “Profound Autism”

There is no such thing as “profound autism”. That’s another Autism $peaks myth, I’m afraid. It literally exists to dehumanise autistic people and so parents who profit from exploiting their autistic child can deploy “oh you’re not autistic like *my child* is autistic” against autistic adults who challenge them on it.

Everyone who is autistic is as autistic as each other. The autistic spectrum is not a linear line from “more autistic” to “less autistic”. It’s more like a big ball of features such as sensory sensitivity, issues interpreting neurotypical facial expressions and voice tones, becoming easily overwhelmed while processing etc etc. Where we sit on each of these features may be close to neurotypical or very different from it. Some autistic people may have co-occurring conditions that affect these things too, or can affect other parts of how we live our lives.

What those people usually mean by “profound autism”; a nonspeaking person who has frequent meltdowns because their sensory needs are not met and is constantly incredibly overwhelmed, stressed, and deregulated as a result. They might add in issues to do with toileting, personal care, ability to manage one’s own safety etc. They usually do this with a complete lack of awareness about the triggers that are causing the autistic person to become deregulated, the sensory needs that aren’t being met, or that behaviour is communication. They also tend to fail to acknowledge that all people develop over time and that many of the autistic adults speaking to them may have presented very much like their children at that child’s age.

There’s actually a wide variety of common co-occurring conditions with autism, some of which are frequently swept under only some of which get swept into what is perceived as the “severity of autism” and others which habitually are not. But we are all autistic, all part of the autistic community, and we all deserve to be treated with respect, our communication – whether verbally, with AAC, or just through behaviour – respected and acknowledged, and our needs to be centered in our lives.

Just to pick an example; in my family, my brother and I are both autistic and have ADD/ADHD. I am primarily verbal (though I use AAC as a backup) and have two university degrees. I live with my husband and our pets. I work part-time remotely. I am an ambulatory wheelchair user and a full-time mobility aid user due to hEDS and POTS. I have pretty severe chronic pain and chronic fatigue, but I adore reading, podcasts, embroidery, sewing, tabletop role play and LARP. My brother is primarily nonspeaking and has co-occurring ID (intellectual disability). He lives in his own home with carers during the week and with our parents at weekends. He is very physically able and graceful – he adores trampoline, swimming, ice skating and climbing, and also going out to cafes and pubs and local social clubs (before Covid), cartoons and nature.

I am not going to discuss how either of us manage toileting or personal care because in my own case it’s none of your business, and in my brother’s case those are very much personal details no one should ever share about anyone else without their very express permission. It’s also notable that the disabled community in general sees the focus abled people have on how people toilet and whether or not we need assistance as incredibly dehumanising. Honestly, excretion and bodily hygiene are not huge parts of life. As long as a person’s needs are being met there, that’s all that’s important. If someone’s needs are not being met, that’s incredibly important because of how badly it can affect health and comfort, but that’s it. No one needs or deserves the details unless they are directly involved.

My brother and I are both autistic people with co-occurring conditions who live meaningful and largely happy lives as active parts of our communities. We absolutely struggle with our various conditions at times, but I can absolutely guarantee that we both struggle far more due to ableism and underfunded services.