Autism Acceptance Month

By Jeremy Shuman

April is Autism Acceptance Month, so here is a timely info dump of information related to autism that is likely to provide some new information or perspectives. Below are two lists. The first is advice for people without autism (allistics) who are interested in better understanding what an autistic person might ask of them to be a better ally. The second is for autistic people who have not been well affirmed in their identities.

For allistics:

Autistic people often love to communicate in depth about a topic they are deeply into. These topics can jump around.  Some people call them “special interests.” These interests are often incredibly useful for emotion regulation and some autistic people intimately link their identity to their special interest. If you want to support an autistic friend, be kind about info dumping.

If you want to know about autism, you’ve got to do your homework. That goes for the neurotypical (NT) and neurodivergent (ND) crowds. If you need a place to start googling, read what adult autistic people have to say about these terms: neurodivergent (ND), neurotypical (NT), allistic, person first language vs identity first language, stimming, special interest, executive function, sensory intolerance, sensory processing difficulty, personal demand for autonomy, spoon theory, double empathy problem, AAC, social story, neuroqueer. Also look into the discussion about organizations like Autism Speaks in comparison to organizations like the Autism Self Advocacy Network.  

Autistic people often have intense feelings related to justice, honesty, grief, loyalty, or integrity.  A lot of misunderstandings between NT and ND people revolve around misinterpreted intentions regarding these values.  It’s important to slow down and talk it out when bumping up against an ND person triggered by something seemingly minor or when an autistic person has upset you and was surprised by your reaction. Resolving miscommunication saves relationships.

Autistic people are often blunt and factual. That is likely to make you feel big feelings.  Remember that the way you communicate makes them feel big feelings too. You may be surprised to learn that autistic people often feel less upset by blunt communication than by supportive language that minimizes or saves face but feels dishonest.

Therapy for autistic people largely is non-affirming. Adult autistics, who went through ABA (ie, the gold standard treatment for autism) as a child, often condemn the intervention. An intervention is popular if it promises to make an autistic person learn to act like an NT person. These sorts of interventions can foster a belief that authentic interests and emotions are invalid and must be hidden behind a mask of false personality to suit the needs of others.  Learning about how NT people think can be valuable, but any intervention that tries to change an autistic person’s authentic nature is sending a message that is traumatically invalidating. Stims do not serve the same function as compulsions in OCD, so behavioral therapies targeting negative reinforcement are inappropriate. As much as possible we strive to provide support rather than intervention.

People shouldn’t have to show you their papers for you to respect them. There are many reasons not to seek official diagnosis, not the least of which are providers who only understand what autism looks like in 8-year-old white boys. If someone communicates a need to you related to their neuro differences, assume good intent, negotiate a compromise that also takes your own needs into account, and don’t worry about the labels so much.  

Some people have heard about the common co-occurrence of ADHD and autism, but a lot of folks don’t know about the ways in which other identities, neurodivergences, and medical conditions often overlap with autism. There is a correlation between autism and OCD, mood disorders, eating disorders, nonbinary gender, queer sexual orientation, epilepsy, Ehlers-Danlos Syndrome, autonomic dysfunction, gastrointestinal problems, immune system dysfunction, mast cell activation syndrome, chronic pain, and energy level neurological differences. While these co-occurrences aren’t symptoms of autism, it can be helpful for autistic folks to keep in mind this association.

For autistics

Learn interoception and self-care. Take time to reflect upon your mental and physical health.   Trust your knowledge from your experiences with your body.  Do your best to find a medical team who will listen and ask questions in screening phone calls and initial appointments to determine if they are ND affirming before investing in a plan of care.

Be proud of who you are. Heal the old wounds. Cry and beam. Demonstrate your special interest with flair.

Figure out who you can trust. Talk to the people closest to you about your neuro profile and be totally authentic. Create environments where you can be yourself.  

Sensory intolerance will never habituate.  You get better at tolerating it if you try. But NT people will conflate learned helplessness and “getting over it.” Don’t be helpless to your sensory needs.  Be unafraid to talk about it. Offer small compromise solutions.  

Masking is extremely useful, but exhausting. Learning social skills and behavioral strategies can have great value, if the learner also knows when not to apply these techniques. Bringing masking into core areas of your life is a recipe for burnout.

Professional and personal disclosure of neuro difference comes with an individual set of costs and benefits. There is privilege in having a choice in that disclosure.

Therapy is an extremely useful support. Find a therapist who can point out how you self-invalidate. Find a therapist who will encourage you to engage with special interests.

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