[image description: a photo of the Hudson River, taken by Sparrow Rose Jones. A bank of clouds hangs low in the sky. The river looks inscrutable and the way to it is mostly inaccessible, due to scrubby weeds and aging concrete structures.]
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.
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.
“avoid therapies that take away your child’s ability to set boundaries and enforce them.”
This particularly resonates. State funded early intervention only covered ABA Therapy. Our complete ignorance what to do. The school saying “good job parents”. We thought we were doing the right thing. Totally did not understand when they said we needed to provide a therapy room in our home that would isolate them from us and was glad in the end we refused. I watched every session. We even had “therapists” quit because they did not want to be observed. Sorry Not Sorry. Truly sorry for the turmoil my son went through. They kept using the magic phrase “extinction point”. He kept hitting, screaming, breaking things. He wanted to sit and draw(he does this continuously throughout the day). He was communicating and the professionals ignored it. Compliance was more important. He will comply. No. He is not a dog to train!! Arianne Zurcher sharing on her blog Emma’s story of regression hit home and we ended therapy.Now we advocate for his needs and not accommodating their need for him to comply. He wants to please his teachers so when he doesn’t we ask why. Thank you for writing your experiences. I’m sad that you’ve had to go through that but hope that you’re words will impact others in their decision to pursue “treatment”. I can only speak from my point of view as a parent. As someone who has lived through it your words are much more valid.
I had a BCBA teaching a psychology class this semester, and he said one verrrry interesting thing: Extinction bursts can only happen if the subject has been previously conditioned. This is, shall we say, interesting, because meltdowns are not actually a thing autistics have been conditioned to do to manipulate people, like ABA therapists think.
Rather, it is actually an unconditioned response to stress, as surely as salivation is an unconditioned response to food smell. Therefore, a great many of these so-called “extinction bursts” reported by ABA therapists, in which meltdowns get worse, are FAKE. That is, they are not extinction bursts at all, but rather an unconditioned response that is occurring due to a magnified level of stress.
What ABA therapists call “extinction bursts” of meltdowns are actually the prelude to inhibitory conditioning, in which the child is (cruelly) conditioned to shut away their feelings and go silent lest their punishments* and disapproval get worse.
Oh, and as a side note, that same professor said that one should electrically shock kids á la JRC to prevent self-injury, because it is supposedly less cruel than either restraining kids for the rest of their lives or medicating them into zombies (yes, he did literally say zombies),
without even considering that severe self-injury could indicate a medical problem or that electric shocks, if not now strong enough to be worse than a concussion, could get that strong after the kid adapts and the therapists step up the “dosage” of the shocks. Not to mention that medication most closely resembles drinking oneself into oblivion, the only thing related to those desperate measures that desperate people choose for themselves fairly regularly.
So to any of you out there who read ABA apologist comments saying they don’t support electric shock, don’t believe it. They’re pandering to you.
*The use of “punishments” is the lay definition. The therapist may intend to use purely positive reinforcement and not give it, but the child experiences it as a punishment from their end because the emotional vibes they pick up are similar to those of one administering a lay punishment.
Wow. Thanks for sharing that.
Very sad. School supports can contribute massively to this as they’re undereducated and underqualified to assist, yet they do.
Very good advice: also in the comments above. I would look at a therapy like Cognituve Behaviour Therapy with a Clinical Psychologist. If you look at the therapy being drawn from a scientist practitioner standpoint you are looking for evidence based scientific support. Then I would look for someone who understands Autism. Not all clinicians will have knowledge or experience with autism and gender orientation. If they don’t have experience with all the above then they need to be open and willing to explore and understand alongside the person they are working with. Clinicians without knowledge of neurodiversity may mistake autism for disorders like OCD, schizophrenia, bipolar or personality disorders like Borderline personality. Others conditions such as these may be present but underlying all is the neuro-developmental difference. The medical professions “first do no harm” should always apply. You can’t force change. If there is resistance it’s is so important to look at why. You may need to learn new coping skills before trying to reduce more damaging behaviours. Therapy should be practical and helpful. A partnership where you work together to understand and resolve issues. It should not be confusing and disempowering with an “expert” forcing change.
Thank you, but CBT made me incredibly anxious and distressed. I realize the literature says it is a good fit for Autistics. That was not my experience.
I cannot get the right words for the emotion unleashed by this post. I see your bind and it feels like a Catch 22. You are completely at the behest of the system and ‘professionals’. All you want to do is be you.
I am flabbergasted the C-PTSD and autism have such overlap. How to differentiate one from the other??
I wonder if there is a therapist that would meet you in some location that isn’t a therapy office, and if that would even be manageable for you. I hope you can get the transition you want.