This is not going to be a politically correct post. It is going to offend some people, but I want to be completely honest about my experience as a therapist who does autism assessments.
I approach every assessment from the perspective that each person who comes to me is experiencing discomfort or pain in their lives for some reason and that they are looking for answers. Although many of them are “1000% sure” it is autism, I always consider that there are other factors at play and that not everyone who thinks they’re autistic necessarily is.
It’s important to think about all of the options because I believe that diagnosis (as imperfect as it is) can guide treatment. Some autistics may find this offensive because they think that autism doesn’t need to be treated (and I personally feel they would be wrong about that), but if someone is not autistic and is instead suffering from a trauma-related disorder, dissociative disorder, social anxiety, or the wide array of challenges that make up the human condition that some people “feel” is autism, inaccurate diagnosis may interfere with them getting the help that they need.
I never look for autism in isolation but try to understand why someone is struggling and what might be going on. Sometimes, it is autism. Sometimes, it’s not. This is one of the reasons that I oppose self-diagnosis. We don’t have the ability to see ourselves objectively and although our subjective experiences are important, they don’t tell the whole story all of the time.
Subjective Experiences
How are our subjective experiences and interpretations sometimes misleading?
Not infrequently, I have clients who bring entire 3-ring binders linking all of their symptoms/traits to the DSM-5-TR criteria for autism. I love this, actually, and I try to read through every page. At the same time, what people sometimes feel meets criteria for autism doesn’t. Here are some examples:
What are some things you are passionate about, do a deep dive into, and really love talking about and learning about?
”Golf”
”That sounds really interesting. What do you like about golf?”
”I don’t know.”
”Do you have any favorite players or follow the statistics?”
”No.”
”Tiger Woods was pretty big for a while. Is he still?”
”I don’t really know.”
”When was the last time you played golf?”
”Three years ago.”
”Do you have any other hobbies or interests?”
”Not really. Golf is my special interest.”
”What makes it your special interest?”
”It’s just the only hobby I have or thing I do.”
”Are there things you like to research or you know a lot about?”
”Not really. I work and I don’t have time for interests.”
Social Relationships
“Tell me about your friendships and relationships right now.”
”I have a big circle of friends.”
”That’s great. Do you ever feel like you’re on the outside or that you struggle to fit in?”
”No. I’ve really never had trouble with friendships.”
”What kinds of things do you like to do with your friends?”
”We get together and watch movies or talk.”
”What kinds of things do you like to talk about?”
”Pretty much anything. We talk about our lives and politics and deeper topics.”
”Is it ever hard for you to keep the conversation going or just join in when people are talking?”
”No, that’s never really been a problem for me.”
”Do you feel satisfied with your social relationships?”
“Yes. I have good friends and don’t have trouble meeting people.”
”Where do you go to meet people?”
”Well, I go out to the bars on the weekends and meet people at work and church.”
”Is it hard for you to know what to say when you are first getting to know someone?”
”Not really. I consider myself to be an extroverted autistic.”
Developmental History
“What was it like for you making friends growing up?”
”It was fine, I always had a lot of friends.”
”What sensory sensitivities do you remember having as a child.”
”I don’t really remember, but I’m sure I had some.”
”What interests were you passionate about growing up?”
”Well, I liked playing video games.”
”Cool. What game system would that have been?”
”I had a Play Station.”
”What were your favorite games?”
”There were so many. I liked a lot of them.”
”You must have played a lot.”
”I played when I could, maybe an hour a day. I wasn’t really allowed to play much. Also, I played hockey and that took up a lot of my time.”
”Hockey can be really time-consuming. You must have really liked it.”
”It was okay. I liked winning but I didn’t like getting up early and practicing so much.”
”Would you mind having your parent fill out an early developmental history form so I can get a little more information?”
”No, I don’t feel comfortable with that.”
”I understand. Sometimes parents remember things differently than how we experienced them.”
”My mom doesn’t think I’m autistic and says my childhood was pretty normal.”
”It sounds like you disagree with that. I get it. What do you feel about your childhood wasn’t ‘typical’ that makes you feel like autism fits for you?”
”I was into alternative music and wasn’t really interested in dating until I was about 24.”
”So in some ways you felt different from your peers.”
”Well, I just didn’t like mainstream things. Like I dressed a little more punk and my tastes were different.”
”But you didn’t have difficulty making and keeping friends or any real social difficulties?”
”No. I was actually pretty well-liked.”
”But you felt different?”
”Maybe.”
Impairment
“How have the things that we’ve talked about today impacted your life?”
”What do you mean?”
“What difficulties are you having in your life because of some of the traits we’ve talked about?”
”Autism isn’t a deficit. I’m not having difficulties and I don’t need help.”
”When we first started talking, I asked you what you hoped to get out of this assessment and you said to know yourself better and to find some resources for yourself.”
”I want an official diagnosis of autism because I’m autistic and I already belong to autistic communities and don’t want to feel like I’m faking.”
”What would it mean to you if autism isn’t the answer?”
”That obviously I’m masking and you don’t see that.”
Tik Tok Autism
Maybe you’re thinking that the multiple examples I provided are rare or aren’t real. Some of you may be trying to figure out why they don’t fit into the DSM-5 model of autism, and that’s okay. These experiences aren’t rare in my practice and I’ve come to define a sort of “Tik Tok” autism inspired by the multiple Tik Tok videos out there of self-diagnosed autists who spread misinformation and glamorize a neurodevelopmental disability that they don’t think is impairing (honestly, if it isn’t impairing, it can’t be diagnosed, but I digress) and is to be celebrated.
I always ask my clients what they have seen on social media, heard, or read that makes them think that autism fits for them. Responses range from, “I like poetry” to “I really identify with person X and he is autistic.” I don’t know how liking poetry became synonymous with the female presentation of autism, but unless it involves having favorite poets, collecting poetry, writing poetry, constantly thinking about writing poetry, ….”, well, liking poetry alone doesn’t rise to the occasion.
So when Uta Fricht comes out and says that the spectrum is becoming so large as to be meaningless, this is what she might be talking about.
I have carefully and kindly explained to people that their symptoms might better be understood by PTSD or another condition and have provided them with detailed information about why including their own self-reports and SRS-2 scores which fall within the “normal” range. People yell at me, call me incompetent, send me information on training seminars (I find this so amusing), and email me back when they’ve spent thousands of dollars shopping for a diagnosis and finally get that autism designation just to let me know how incompetent I really am. I even had someone spit at me. Actually. Fortunately, it was a telehealth visit, but still.
For some reason, people are invested in getting a diagnosis of autism and are unwilling to accept alternative explanations for the challenges they’re experiences. I’m not sure an autism diagnosis has the same stigma it did years ago, but now it doesn’t have the same meaning either. I often hear, “everyone is autistic now” from other clinicians.
Interestingly, I just had surgery and in the recovery room, my nurse asked me to explain to him “why autism is so overdiagnosed.” I attempted to take him on a walk through the history of the DSM and autism diagnosis but at the end of the day, I frankly wanted to agree with him.
There are clinicians out there that will diagnose autism based on someone’s belief that they are autistic because not to do so would be to deny their “subjective experience.” But if their subjective experience isn’t actually autism but is something else? That might be causing harm.
The Neurodivergent Movement
Although I think that the intentions were good and that autistic people have been helped in some ways by reduced stigma, generally speaking, the neurodivergence movement is problematic. Most of the members of this movement consider themselves “high functioning”, “formerly Asperger’s”, and “Level 1” without understanding that even Level 1 autists need support and at times significant support.
They have created a movement where autism is a magical thing to have; something that doesn’t require treatment, and isn’t a problem.
I have a lot of feelings about that, but I think I’ve already waded too far into controversy to keep going. Uta Frith is not wrong. The autism spectrum has collapsed on itself and now the needs of people who are truly struggling are being dismissed and minimized. The diagnosis is becoming meaningless. We don’t need to create a category for profound autism. We need to stop overdiagnosing autism.
I really care about the people who come to me for assessments and try to help them understand themselves and what might be causing them to suffer or struggle. I want to help people. I just don’t believe that providing a diagnosis of autism when it can’t be justified is helping. In fact, I believe that it is hurting our understanding of autism as clinicians and as a society.
