On Processing Big Post-Diagnosis Emotions

What’s the point (of your emotions around your autism diagnosis)?

A distant friend reached out to me this week and told me about their recent autism diagnosis. We had a brief conversation about it during which he expressed wanting to feel anger. He said “I feel like I could scream for days”, but then admitted that practicality won, “because logically, there is nothing I can do.” 

This hit me so hard. The sheer resignation of “nothing I can do” after decades of struggling to be “normal” and failing in one way or another, only to learn that there was an explanation the whole time. Would it have helped to know sooner? That is impossible to ascertain. The treatment and support options available to autistic youth often cause harm, even today. And they were much more likely to do so decades ago. Many autistic adults have spoken out about the trauma caused by the “therapies” they underwent as a kid, especially early ABA therapy. 

I have also convinced myself to lean away from hurt and anger because there was “nothing I could do” about it. And I don’t know if this is an autistic thing, or not. The idea that there is no “point” to emotions if you can’t do anything about them. If there is no practical solution or remedy. It might be autism, it might be American individualism, it might be adulthood, or capitalism, or patriarchy. 

Whatever it is, it’s missing the point. Or rather, it completely erases the point of feelings by shackling them to practical “solutions” for their very validity. 

It’s a devious form of behaviorism. 

For the purposes of this discussion, behaviorism is the focus on observable traits (or behaviors) over internal experiences particularly when developing diagnostic criteria for psychological disorders. The diagnostic criteria for autism in the DSM 5 is heavily based on the degree to which those autistic traits are observable to the evaluator, teachers, or parents. Many people remain undiagnosed or misdiagnosed because the evaluator looks at observable behaviors such as making eye contact, going to school, or holding a job and assumes the person can’t be autistic, regardless of how much their internal experience of autism matches the descriptions of other autistic people. 

Part of what has led to a jump in autism diagnoses in the last 30 years is a shift away from the behaviorism bias in the diagnostic criteria. Some evaluators will now take into account the patient’s internal experiences and personal accounts, as opposed to purely observable traits, in no small part because many autistic people have learned to mask those traits.  

The same way that observable behaviors validate experiences of, or even the very existence of autism, we now use them to “validate” our emotions. That’s the “I can’t do anything about it” part. The “do anything” would be the observable behavior. My friend is using the same trick that psychologists use to misdiagnose autism in high masking autistic people to talk himself out of his emotions. There is no point unless it will result in tangible action. There is no autism unless there are tangible behaviors. 

Wrong on both counts. Your autism is real with or without the “validation” of observable diagnostic criteria (hence why self diagnosis is valid). And your feelings have a point without the “validation” of something that you can do about them.

So what’s the point of feeling like you could scream for days after a late autism diagnosis (or any other big emotion)? 

First, treat an autism diagnosis like any other big life transition. You wouldn’t tell someone who is having feelings about losing their job, or moving to another state that their feelings have no point, right? Expect to experience a range of emotions that may evolve over time as you process the understanding of your diagnosis (or self realization).  

Try not to push these emotions to the side. The feeling is the doing. The transition that an autism diagnosis represents is not the same as other life transitions because there are few external observable “events”. The transition is primarily internal. It is felt, not seen. 

You have just received news that explains so much of your life. That’s huge. But no one can truly understand and feel the implications of that except you, and perhaps others in the autistic community. So bear your own witness to your experience or go be in the company of others who can understand. 

Externalize your feelings in some way. Journal about them, make audios or videos about them. Create bad art. Poetry. Pictures. Or just talk to yourself about it out loud. Find a way to express those feelings through movement or song. Turning towards a creative outlet will help you process the emotions and regulate your nervous system. 

Second, shift your focus from changing the past to rewriting your story. Changing the narrative is one of the most powerful things you can do. You grew up thinking that all your struggles were due to personal failings, and now you’ve learned there’s an underlying reason. It’s not that you weren’t trying hard enough. Your brain is literally wired differently. 

This is a huge opportunity to shed the shame and guilt about all the things that you thought were wrong with you, and to reframe the narrative. You did the best that you could in a world that was not built for you to succeed. You made it so far with an unsupported disability. You didn’t deserve how you were treated. But beginning today you can learn about your needs, start to advocate for yourself, and request better treatment. It is not your fault. It was never your fault. 

Adopt a neuro-affirming mindset. Focus on strengths instead of deficits where possible. Autism doesn’t mean that you are disordered, despite the pathologizing language of the evaluation and diagnosis. Autism is just one expression of the natural diversity in human brains. You are not broken. 

Third, it’s important to continue the work of learning and developing into an authentic version of you as an autistic person that has the capacity for joy and thriving. Developing practical tools such as coping skills, understanding your energy fluctuations, sensory needs, and support strategies will increase wellbeing and decrease burnout. Some people prefer to learn and develop on their own, but you can do it faster and more efficiently with the help of a certified coach like me.