“Profound Autism”?

What is Profound Autism? Does it exist? Why or Why Not? This is a trending question amongst the autistic community and its caregivers. And I’m no expert, just a Mom with a child who has Level 3 Non Verbal Autism with Co Occurring Severe Intellectual Disability and Severe Expressive Receptive Language Disorder -aka one presentation of Profound Autism- (among other diagnoses such as : Mixed GMFCS Level 2-3 Dyskinetic/Ataxic Cerebral Palsy, Lennox Gastaut Syndrome, Global Delay -developmentally around 18 months while chronological age is 7-, and many more medical related diagnoses as well…), I also have two level 1 Autistic Children, and I’m Level 1 Autistic myself. But the question that stands, is, is Profound Autism, you know, a “thing”? Or is it, rather, just Level 3 Autism with Co Occurring Disabilities like, Intellectual Disability? Well, I can’t give you a factual answer but I can give you my opinion so, here it is. I think both are true. Profound Autism is indeed just Level 3 Autism with Co Occurring Intellectual Disability and maybe other disorders like PICA, Expressive/Receptive Language Disorder, Global Delays, etc… however, calling it Profound Autism simplifies the wordage and sums up the descriptive nature of the lable but relays the same information, so why is it so bad to use that term? I mean I get that Autism is a spectrum and everyone on it has trouble dealing with their symptoms (often the same ones since it’s the same disorder) even on the “mildest” or “highest functioning” sides, because it is indeed still a disability no matter what place you fall on the line… as I’m on the “lighter” side and so are my older two boys… but honestly all I see is the level 1 or 2 individuals who CAN get online and defend themselves speaking up and out about inclusivity and acceptance and how they are JUST as autistic, and have the EXACT same struggles as all other autistic individuals despite level, etc… and shooting down any mention of low functioning, profound, severe, whatever… terms for the other end as if they don’t exist and I don’t find that fair. What about THEIR voices? THEIR experiences? These groups of autistic people can’t speak, know no danger, are in diapers (even as adults), function at the level of toddlers a lot of the time or young children, have severe self injurious behaviors, aggressive tendencies, and more! They need 24/7/365 care and you’re telling me that they are NO DIFFERENT than us? Not even a little? That our bad days look like even their good ones? Come on, be realistic and let your selfishness go for a moment and REALLY think about it… is it really the SAME? If you’re being honest with yourself as I do as an autistic individual and my 2 oldest children do as autistic individuals, it’s not. We of course need support, help, understanding, acceptance, awareness, all that too, as we often get overlooked for being too close to normal and that’s a shame that needs to be corrected…. but we have more capabilities than the other end does and it’s about time we recognize that and stop taking all the attention for us and let them have some featured time in movies, talk shows, books, etc…. because they exist and matter too. And that shouldn’t just be in case studies and research papers. Let them shine. Be seen. Heard. And recognized. Because saying or showing they have similarities to us as we have the same disorder but are also very very different due to being on opposite ends of the spectrum isn’t bad, it’s just honest. And this world needs more honesty. Much love to all. ❣️