Trigger Warning: If you use the phrase, “autism is a gift,” and hate 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 (or whatever else you want to call it). 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 people with autism, 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.
12 Comments
Kristi
2022-08-07 at 8:30 PMWow 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.
Angela
2023-09-12 at 2:16 AMI am so very sorry.
Xanthe
2022-08-13 at 5:01 PMI 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”.
Alin
2022-08-16 at 8:49 AMI 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.
Straycat
2022-09-23 at 1:09 AMWow! 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.
AH
2022-08-27 at 8:31 PMAs 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.
Ariane Greene
2022-11-13 at 12:27 AMThis 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.
Alice
2022-12-06 at 1:57 AMWhat about the autistics who will never speak verbally but are labeled “profoundly autistic” and never provided with the resources that match their actual intellectual ability to communicate nonverbally? What about the “profoundly autistic” kids who are denied agency from a young age only amplifying the meltdowns and aggression? Please reconsider the urge to segregate autism by oversimplifying the spectrum. Doing so only buys into the idea that autistics who cannot contribute to the economy are “severe” and those who can “pass” are unworthy of support. There are so many co-occurring conditions that CAN in fact be placed on a severity scale, Autism is vast spectrum and “mild” is not what meets the eye, just as “severe” deserves more credit and humanity.
Bridget Grenolds
2023-09-11 at 12:09 AMThere’s a popular scenario that I, to often, read on autism FB groups where a parent is offended when a stranger says, “He doesn’t look autistic.” The parent’s response is usually something like, “Oh, I’m sorry. We didn’t put his autism outfit on today.”
Truth be told, I understand the stranger’s comment because I know that such a comment would never be said to me. Why? Because my beautiful grandson’s autism is VERY VISIBLE. All anyone needs to do is watch him for more than 15 seconds. He is ASD 3, severely/profoundly autistic. At 6 years old, he still wears a pull up. He gets out of a pool and can’t understand not stripping as soon as he’s on the deck, regardless of how public the pool is. He walks around with an AAC device hanging off him. When he’s happy, he flaps his hands, jumps, and giggle. He often stims with his fingers at the corner of his eye. And, when he’s not happy or is overstimulated . . . WATCH OUT!
Because of ABA therapy, my grandson is now able to point, to sit still for more than 5 seconds to learn something, to respond to his name, and more. I don’t believe that he has a significant intellectual disability and, therefore, suspect that he will learn and accomplish so much more. All the same his autism is severe/profound and, aside from receiving a miracle, he will never drive or live on his own or have a job or a family of his own, or do so many of the things that “high functioning” autistics can do.
Doctors, educators, and all people must take the severity levels of autism seriously if the word “spectrum” is going to suffice.
Willie
2023-09-12 at 10:42 PMBefore the author has the nerve to trivialize Aspergers syndrome she should meet multiply disabled person with Aspergers syndrome. Aspergers or whatever is my secondary disability my main disability is Neurofibromatosis a grotesque and deadly genetic nerve tumor disorder. I cannot wait for someone to do an article on that disease.
Loxterkamp Colleen
2023-11-14 at 8:48 PMThank you for this article. It seems very hard to find anything online addressing the difficult aspects of asd. I have a 25 yr old son, currently in a 24hr care residence. He was considered “moderate-severe global developmental delay with profound speech delay” until he was 16 and then he received a ASD diagnosis. Since puberty he has high aggression, many trigger and toileting aggression as well.
I have learned much and endeavouring to learn more. I am looking to bring some insights into the caregiving world on some of the more severities of this disability.
Thank you for sharing And bringing some realities that need to be heard, needs to be understood.
Autism Forever
2024-03-27 at 6:00 AMIt does not offend me. I am just astounded by your stupidity and ableism. You blame Autism for everything. Autism is simply a type of neurodiversity, type of brain and nervous system setup. Ever heard about comorbidities? Yeah start digging there and maybe some day you will be cured from your ableism.