Autism, Therapists, and My Experiences
It's no secret I have a deep disdain for the mental health professions, based on my personal experiences and observations. My work with families and students also reinforces my suspicions that too many support professionals don't understand the autistic experience, including those professionals supposedly specializing in autism.
My most recent blog entry on the topic was:
Autism Therapies and The Autistic Individual
http://theautisticme.blogspot.com/2011/06/autism-therapies-and-autistic.html
One of the readers of my blog sent a note that included the following:
In 2006, the University of Minnesota's Disability Services had asked a campus counselor to help develop a list of concerns we could present to instructors to help them understand my physical limitations and cognitive differences. This was shortly after I had lost a job and had been called "Gimp" after falling in a university hallway. The job loss had a lot to do with people being "uncomfortable" around me. I believed it was because I used the cane and moved in a rather "weird" manner. There's more, but the reason to see the counselor was simple: obtain a written list of traits for faculty, so I'd have some legal protections against discrimination.
Meetings began in early October. I kept waiting for the list for Disability Services. The counselor didn't help write the list. Six weekly meetings passed and no list. Instead, I was feeling worse and worse about being different. I was starting to despise the university, some of the faculty, a few of my peers, and the entire disregard for my differences.
Any problems I was having started to feel like my fault. It was as if I purposely chose to be different and wasn't willing to change. I was resisting adapting, the counselor implied. Yes, because migraines, back pain, severe leg and foot pain, those are all symptoms of an unwillingness to adapt.
The counselor talked several times about having an autistic relative. He told me how much he understood my traits. He would help me overcome them. You think I hadn't tried for 40 years to change? Plenty of people had told me I was defective. I know I'm supposed to be different according to too many people.
I finally terminated the sessions. As I stood shaking violently, I told the counselor he had helped the ignorant faculty by making me feel lousy. I wasn't coming back.
Before that, I met briefly with an educational specialist to deal with focus issues in the late 1990s. I had stumbled badly at work and in an attempt to return to graduate school. I couldn't focus and I couldn't deal well with sensory issues. The educational psychologist had the psychiatrist with whom he worked prescribe Ritalin (the generic) and various other medications. That psychiatrist interviewed me for less than fifteen minutes.
The educational psychologist? He went way, way off the anticipated path of dealing with my focus issues and inability to deal with ethical gray areas and school and work. My rigid thinking was a demonstrable problem in both settings. The medications were for those issues, the psychologist said.
I'm not going to detail everything the psychologist suggested were issues in my life. Suffice it to say, I was too trusting and assumed his advice was correct, no matter what I was feeling or thinking about the advice. My relationship with my wife was damaged, certainly, and other relationships were affected negatively.
Only in the last two or three years, have I come to appreciate that I am the way I am. I do not need to be "fixed" and I don't need to keep trying to change traits that are too often the result of trying to deal with real, severe physical pain. I'm not going to endure pain and pretend I'm not in agony simply because that would help me appear more normal to the world at large.
If I'm in pain and physical distress, I'm not going to force myself to ignore those important warning signs.
How do I know the psychologists, psychiatrists, and counselors were wrong? Because in the end medical doctors discovered I had real physical problems, possibly for years, that had caused traits confused for "acting autistic." I had a dangerously low blood count and needed transfusions. The top epithelial layers of both eyes had torn repeatedly, due to base membrane dystrophy. The pain of eye injuries is so intense many people faint, a doctor informed my wife and me. I had experienced numerous eye tears, maybe as many as three or four dozen. Think about that. I've now had several eye surgeries, including a laser procedure.
And the mental health people? They told me I couldn't focus and read because of autism. I couldn't handle lights in a room because of autism. I was afraid of sleeping (when my eyes often tore) because of autism. Yep, it was all autism. Even when I said, "My eyes hurt. They really do hurt."
I was told autistic children often say the same thing. Okay. Maybe those children have eye problems?
I even had a hernia. In 2011, we discovered I had real nerve damage in a my left foot, from years of a problem that had never been addressed. That one reason I walked "oddly" — not autism. (Being partially paralyzed also affects my gait.)
So, a great many "autistic" things were serious physical conditions. The mental health experts were so biased after reading various diagnoses that they couldn't see the physical complaints were real. The pain was not a symptom of emotional or cognitive issues.
At least EIGHT mental health professionals in two states had tried to address the wrong issues within a decade. And their approach, even if my issues had been related to autism, were simply not the best for an autistic individual. And that's not counting my childhood experiences!
I haven't written about even a fraction of the lousy "therapies" I've seen personally or been asked about by parents. Stunningly bad therapeutic approaches, from at least this one man's autistic perspective.
Yes, I'm biased. I think most people would be.
My most recent blog entry on the topic was:
Autism Therapies and The Autistic Individual
http://theautisticme.blogspot.com/2011/06/autism-therapies-and-autistic.html
One of the readers of my blog sent a note that included the following:
"Your experiences were in the 1970s and 80s. Things have changed. You don't know what is done now for autistics."My last individual appointment with a counselor specializing in autism was in late November 2006. That is not ancient history. I also had a follow-up evaluation in early 2007 during which the psychiatrist was condescending, critical, and inattentive to anything I was trying to explain to her. (I won't write about her or her assistant. Pointless waste of several days.)
In 2006, the University of Minnesota's Disability Services had asked a campus counselor to help develop a list of concerns we could present to instructors to help them understand my physical limitations and cognitive differences. This was shortly after I had lost a job and had been called "Gimp" after falling in a university hallway. The job loss had a lot to do with people being "uncomfortable" around me. I believed it was because I used the cane and moved in a rather "weird" manner. There's more, but the reason to see the counselor was simple: obtain a written list of traits for faculty, so I'd have some legal protections against discrimination.
Meetings began in early October. I kept waiting for the list for Disability Services. The counselor didn't help write the list. Six weekly meetings passed and no list. Instead, I was feeling worse and worse about being different. I was starting to despise the university, some of the faculty, a few of my peers, and the entire disregard for my differences.
Any problems I was having started to feel like my fault. It was as if I purposely chose to be different and wasn't willing to change. I was resisting adapting, the counselor implied. Yes, because migraines, back pain, severe leg and foot pain, those are all symptoms of an unwillingness to adapt.
The counselor talked several times about having an autistic relative. He told me how much he understood my traits. He would help me overcome them. You think I hadn't tried for 40 years to change? Plenty of people had told me I was defective. I know I'm supposed to be different according to too many people.
I finally terminated the sessions. As I stood shaking violently, I told the counselor he had helped the ignorant faculty by making me feel lousy. I wasn't coming back.
Before that, I met briefly with an educational specialist to deal with focus issues in the late 1990s. I had stumbled badly at work and in an attempt to return to graduate school. I couldn't focus and I couldn't deal well with sensory issues. The educational psychologist had the psychiatrist with whom he worked prescribe Ritalin (the generic) and various other medications. That psychiatrist interviewed me for less than fifteen minutes.
The educational psychologist? He went way, way off the anticipated path of dealing with my focus issues and inability to deal with ethical gray areas and school and work. My rigid thinking was a demonstrable problem in both settings. The medications were for those issues, the psychologist said.
I'm not going to detail everything the psychologist suggested were issues in my life. Suffice it to say, I was too trusting and assumed his advice was correct, no matter what I was feeling or thinking about the advice. My relationship with my wife was damaged, certainly, and other relationships were affected negatively.
I'm not on any medication now. Turns out, while I might be considered ADD/ADHD, the medications aren't useful. I write 1000 or more words a day, and have for the last three years. Yes, I do a lot better after I stopped seeking help.
If I'm in pain and physical distress, I'm not going to force myself to ignore those important warning signs.
How do I know the psychologists, psychiatrists, and counselors were wrong? Because in the end medical doctors discovered I had real physical problems, possibly for years, that had caused traits confused for "acting autistic." I had a dangerously low blood count and needed transfusions. The top epithelial layers of both eyes had torn repeatedly, due to base membrane dystrophy. The pain of eye injuries is so intense many people faint, a doctor informed my wife and me. I had experienced numerous eye tears, maybe as many as three or four dozen. Think about that. I've now had several eye surgeries, including a laser procedure.
And the mental health people? They told me I couldn't focus and read because of autism. I couldn't handle lights in a room because of autism. I was afraid of sleeping (when my eyes often tore) because of autism. Yep, it was all autism. Even when I said, "My eyes hurt. They really do hurt."
I was told autistic children often say the same thing. Okay. Maybe those children have eye problems?
I even had a hernia. In 2011, we discovered I had real nerve damage in a my left foot, from years of a problem that had never been addressed. That one reason I walked "oddly" — not autism. (Being partially paralyzed also affects my gait.)
So, a great many "autistic" things were serious physical conditions. The mental health experts were so biased after reading various diagnoses that they couldn't see the physical complaints were real. The pain was not a symptom of emotional or cognitive issues.
At least EIGHT mental health professionals in two states had tried to address the wrong issues within a decade. And their approach, even if my issues had been related to autism, were simply not the best for an autistic individual. And that's not counting my childhood experiences!
I haven't written about even a fraction of the lousy "therapies" I've seen personally or been asked about by parents. Stunningly bad therapeutic approaches, from at least this one man's autistic perspective.
Yes, I'm biased. I think most people would be.
Things aren't done differently now. Our extremely negative experiences were refreshed by a phone call yesterday but the same agency that harrassed us the first time only 5yrs ago.
ReplyDeleteThey couldn't figure out why I didn't think they walked on water. Couldn't understand why I wouldn't want to have my eldest re-dx'd by them when they wouldn't do it the first time and I had to go over, under and around the system to get it done. "But, it wouldn't be in his public file. It would just be in ours". They want to prove they were right and he isn't autistic. Yet, he has OT, PPM 140, has had public and private speech therapy, is off to social skills camp this summer for a week... Yes, he's doing AMAZING... but we're not done yet. To pay for it it has to go through OHIP. In the last month electronic records have become the norm.
How stupid to they think I am???
I have little to no use for "autism specialists" of any kind.
I believe you.
ReplyDeleteThis blog post confirms what I firmly believe: the way we 'treat' autistic spectrum disorders as a society is completely inadequate. Thankfully, you have an articulate voice to expose these inadequacies, but I am left to ponder those individuals classed as 'low-functioning' who do not have the same ability.
ReplyDeleteI am going to write a more detailed account of my thoughts on this, especially the mechanics of power placed in the hands of 'care-professionals'.