Autism

A separate diagnosis for profound autism

profound autism

Trigger Warning: If you use the phrase, “autism is a gift,” and functioning labels/severity levels, then beware — this post may just offend you. This is a post advocating for a separate diagnosis of profound autism.

The war between profound autism and high-functioning autism

The autism-is-a-blessing movement, to me, is not the empowering, uplifting social progress it’s made out to be — a narrative, from what I can tell, that comes from high-functioning and/or self-diagnosed adults with autism, and parents of “Level 1″ kiddos.

I was reading an online autism support group today and someone wished they could have more AUTISTIC kids. That’s right. And they were judging parents who think raising an autistic child is difficult and wondering why people don’t wish autism on their children.

This post angered me. Imagine coming to that group, in distress, for parenting support and advice, and having your experience completely dismissed and belittled like that.

I’m beyond frustrated with these people ignoring the existence of profoundly autistic individuals, for example, in their sweeping statements about how parents “should” act and feel about their life and the struggles they might be having. You know, the kiddos who grow up to be autistic adults needing 24h care, supervision, and someone to change their diapers at age 40. The kid with limited speech abilities who, at 30, still doesn’t have a way to communicate, after decades of hard work by them and their parents. And the children who tragically never arrive at adulthood because they drown or got hit by a car, having had no sense of danger.

What’s profound autism?

Learn more about profound autism here.

Autism isn’t just the high-functioning autistic with amazing but narrow abilities, struggling with social rules, who gets easily overwhelmed. No. Autism is just as often, if not more often:

⁃ Self-injurious behaviors

⁃ Aggression

⁃ Inability to understand or communicate their needs

⁃ Intellectual disability

⁃ Inability to keep themself safe

⁃ Adult diapers

⁃ 24/7 supervision for life

⁃ Loneliness

– property destruction

Add to that all the comorbid conditions, too, like depression, anxiety, GI issues, and more.

For someone to wish autism on their children shows a significant lack of understanding of autism’s reality and the range of experiences people have with it, both the autistic and the caregiver or loved one. Profound autism sucks.

I love my Charlie beyond words — and for that reason, anything that holds him back from so many things that make like fulfilling and enjoyable is something I’d not wish on him or any other child.

Autism and severity levels

Severity levels exist for a reason. The rare, narrow autistic experience that a mother would wish on her child is not the autism that I parent in Charlie every day. This is why I won’t stop fighting for separate diagnoses, or more specific terminology, to better communicate one’s place on the incredibly broad and varied spectrum.

Bringing back “Asperger’s” could be helpful (and no, he wasn’t a nazi). Or maybe profoundly autistic individuals should have a separate diagnosis from Level 1s and 2s — their symptoms are so much more varied and intense. I don’t know. But the current way isn’t working.

So, if it’s not clear yet from what I’ve shared, no one can or should speak on behalf of autistics, autism parents, or the autistic community. I’m frustrated with people midly affected by autism not understanding how broad the spectrum is. I’m frustrated with people who have so little compassion toward struggling caregivers of people with autism.

If you see your autism as a gift, that is totally fine, and I’m genuinely pleased for you. For many autistics, autism is a debilitating condition that does not improve, defining that person’s existence, and in many cases, their caregiver’s too. You’re allowed to be frustrated — with your own autism or with your kiddo’s. Autism can be very frustrating. Whatever your experience is, don’t deny it or feel shame about it. And don’t let someone else define what it’s supposed to be.

A separate diagnosis for profound autism would fix everything

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6 Comments

  • Reply
    Kristi
    2022-08-07 at 8:30 PM

    Wow this is an incredible post! I’m right there with you. My son is 27, profoundly autistic and aggressive behaviors increasing with each passing year. You are correct that most people don’t begin to grasp or understand those who are profoundly autistic. Thank you for speaking up on behalf of all of us parents and caregivers who are living at the opposite end of highly functioning autism.

  • Reply
    Xanthe
    2022-08-13 at 5:01 PM

    I hear you. I observe those who bleat the loudest are those who will sometimes admit that have no history of issues, prior to a burnout event. Then, are elevated to cult-like status, while claiming to be masking since early childhood without realizing it. Oh, to have that “privilege”, to blend in so no one notices anything, yet claiming disability as “identity”.

  • Reply
    Alin
    2022-08-16 at 8:49 AM

    I completely agree with you; i would even add that you aside that having a profound autistic child changes you as a parent, in a way Beyond comprehension.
    Most people i know, think autism is a blessing in disguise, not even imagining what is like to have an autistic child, what is like to constantly worry for him/her, what is like to live with that fear that one day you might lose your baby, that one day you will leave this life and your child will be unprotected.

    • Reply
      Straycat
      2022-09-23 at 1:09 AM

      Wow! I often hear people on the spectrum saying that once they learn about their autism, they feel like they find their tribe and feel more at peace. For myself, reading you makes ME feel like I found my tribe. There is not enough discussion around our experience, as parents wishing that things were different. There seems to exist a fear towards naming the hardship we are going through, as parents, and even for our children that do suffers because of autism. I am not sure that those receiving negative feedback from the world all day long do not wish that they would choose another option if they could. Thank you Eileen for this great post.

  • Reply
    AH
    2022-08-27 at 8:31 PM

    As someone who has Asperger’s amd retains the right to that diagnosis since I was diagnosed before the DSM V came out, I agree with you about levels, etc. The reason why is because I have had to take a lot if crap because people associated Autism with lower functioning abilities and made assumptions. I was diagnosed at 27, so I know the difference between how ppl treat me with certain qualifications with the diagnosis versus without. It has happened at renowned hospitals (found out the doctor assumed I couldn’t live independently when an out of town medical record confused him….I was living in the area for grad school) and in my job in civil rights compliance despite doing well enough pre-diagnosis as an intern to be hired at the middle level instead of the entry level, and spending a year at my original duty station with no performance related issues (and the transfer was part of a settlement due to someone else weaponizing my autism..and, as nasty as it was, that included no criticism of my work product). I finally started getting real assignments and after FOUR years. The regional director, who knew me as an intern was made aware of the situation and stepped in. The disrespect didn’t fully end until two supervisors retired later on. I don’t think Autism is any more a gift than a curse or vice versa, but I really don’t take kindly to ppl using the connotations of same with me the way they have. I didn’t bust my ass in grad school or anywhere else for people to automatically make assumptions without either considering evidence or asking basic questions.

  • Reply
    Ariane Greene
    2022-11-13 at 12:27 AM

    This is what the whole world needs to read. Autism isn’t cute or glamours! Even “high-functioning” autism is debilitating to me! I cry constantly wondering what my moderate-severe (he’s only two we won’t get a severity for a few more years, so we are stuck between for now) autistic son is going through when he’s hitting his head to make himself feel better. It’s not a gift, not one we asked for. We love him more than life, but it not the life we imagined for our child. I hope you don’t get attacked by the horrible people that come at you, but if you do, just know it’s because they don’t get it, not because what you have said is in anyway in correct or even insensitive! It’s your (our) truth and reality, not theirs.

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