I cannot go to a therapist.
It’s not that I don’t have the money to go. I currently have some amazing insurance through Florida Medicaid. I pretty much have my pick of therapists, but I can’t go. This is going to be difficult for me really soon because I need to go to a gender therapist to prove I’m “stable” enough to be allowed to medically transition. I am concerned.
I am concerned because Kayden Clarke was killed by the police during a suicidal episode triggered by being told he could not have access to medical gender transition until his autism was “cured” (which, as you already know, translates to “never.”) I fear facing similar barriers in my own efforts to get my medical and psychological needs appropriately addressed. I am required to go to therapy; I cannot go to a therapist. I’m sure there are good autism therapy places out there that might be able to help, however, it still feels uneasy to me.
The reason I can’t go to therapy is because I am living with the C-PTSD that has resulted from years of iatrogenic damage resulting from childhood therapy. I’m going to unpack that sentence now, because it probably has some terms you aren’t familiar with and because I just put a decade of pain and a lifetime of aftermath into one sentence. Bear with me, gentle reader. It is impossible to talk about these things and almost as difficult to write about them.
C-PTSD is Complex Post-Traumatic Stress Disorder. It is not yet officially in the DSM, but there was strong debate during the shaping of the DSM-5 and C-PTSD was included in a subsection under PTSD. Childhood therapy is not my only source of C-PTSD, but it was a strong contributor. I encourage you to do some reading about C-PTSD and reflect on the symptoms carefully. The symptom picture will probably look familiar to you. I believe that recognition comes from the large overlap between C-PTSD symptoms and descriptions of autism. I believe that large overlap comes from the amount of trauma that so many Autistic people grow up with.
The Summer 1998 issue of The Communicator, the newsletter of the Autism National Committee (AUTCOM), includes a quote from the book Learning to Listen (1996) by Dr. Herb Lovett:
People who have been hurt in the name of therapy may not understand their plight any differently than survivors of cult abuse or sexual abuse. A common feature of post-traumatic stress syndrome is the flashback in which a person acts as if a memory is present reality…. every time they recall their previous maltreatment, unless their panic and rage are recognized as a function of stress, they are likely to be further stigmatized as “impossible to serve.” – from Can Aversives and Restraints Produce PTSD in People with Autism?
In addition to the trauma of being helpless and subjected to difficult therapies, Autistics have an extra obstacle when it comes to trauma, due to having a nervous system that is different from that of the majority of people and living in a world where we are “neurologically outnumbered,” as Carol Greenburg so aptly puts it. Just living in this world, with its sensory content that leaves Autistics overloaded and underfed in varying patterns and to varying degrees can be filled with trauma-triggering events that seem ordinary to people with nervous systems tuned more to the keys found in the majority of people. Ariane Zurcher has already written about our very active amygdalas and the risk of trauma. Rather than “re-invent the wheel,” I invite you to read her essay on Trauma & Autism.
I don’t believe that all therapists are bad. I don’t believe that all therapists who work specifically with Autistic children, teens, and adults are bad. I believe there are good therapists and helpful therapists. It wouldn’t be so upsetting to me that I can’t go to a therapist if I thought they were all bad and unhelpful. I would love to find a good therapist to help me work through my issues. I would especially love to find a good therapist who can help me with my medical gender transition.
I am not telling people to give up on finding a therapist for their Autistic child. If your child needs help with one or more aspects of life, there’s nothing wrong with looking for a trained professional to help. What I am saying is that therapy should center around what your child needs and should serve your child’s best interests. I have experienced trauma in childhood therapy and it still haunts me and overshadows my life. I have witnessed Autistic children traumatized by bad therapy and the suffering was real and very visible. The entire family suffers when a child is traumatized by careless or harmful therapy, but the child suffers the most, of course. It makes me heartsick when I see it and I would give anything to save children and their families from those experiences.
Iatrogenic damage is damage that is caused by medical examination or treatment. What I am saying when I call my trauma iatrogenic is that it was directly caused by years of therapy. This is not as radical as it might sound. The mental health field acknowledges, albeit quietly, that therapy can lead to iatrogenic damage. Boisvert and Faust (2002) write that, “Iatrogenic symptoms may originate through the over-reliance on a belief system within which therapists interpret, reinterpret, or label clients’ characteristics or distress as pathological. Therapeutic communication that emphasizes pejorative language may introduce clients to this belief system.” This ties directly into the message of autism acceptance — so many Autistic adults (including myself) have told the world how harmful pathologizing language is. These researchers have written an academic article that backs our claim up.
The evidence I’m sharing here is mainly about mainstream psychotherapy. It’s pretty intense data: Dr. Allen J Francis estimates that as many as 15% of psychotherapy patients worsen with treatment. When you add in the special situations that arise in autism therapy, how much does that estimate rise?
I’m asking you to avoid therapies that teach your child that they are lesser or broken in some way. I’m asking you to avoid therapies that teach your child that the ways they move or communicate are wrong when those ways do not harm anyone and are being changed because they “look odd” or make others uncomfortable for non-harmful reasons. I’m asking you to avoid therapies that take away your child’s ability to set boundaries and enforce them.
And I’m warning you about the life-long damage that can come from inappropriate therapies. I actively need to go to therapy and cannot because of the damage I have sustained in childhood therapy. I enter a therapist’s office and start crying uncontrollably and can’t stop until I leave. Therapy is dangerous for me because therapists see that reaction and, understandably, want to have me committed on the spot. My ability to benefit from therapy has been stripped from me, leaving me with fewer tools for coping with life and fewer mentors trained to help me thrive. The damage inflicted in childhood can last a lifetime. Approach therapy with caution and always keep your child’s best interests foremost.