My mother had me tested: Living with autism in the 1960s

Autism as a diagnosis has come a long way since 1908 when the word was first used, as the Timeline of the History of Autism shows. Further, the Timeline reveals that in 1944 and 1945, we learn from Leo Kanner that some of the behaviors associated with autism are “a powerful desire for aloneness” and “an obsessive insistence on persistent sameness” and from Hans Asperger that the boys he observed were “highly intelligent but had trouble with social interactions and specific obsessive interests.”

Not many advances were made in the knowledge base until 1967, when Psychologist Bruno Bettelheim popularized the theory that “refrigerator mothers,” as he termed them, caused autism by not loving their children enough. This turned out to be a false theory.

I was born in 1960 and I displayed the characteristics of the above. In addition, I had no affect (no facial expressions), didn’t emotionally bond with people, displayed extreme aloofness, was selectively mute at different periods, “stubborn” (an attempt to control my environment so as to diminish anxiety I didn’t know I had), perplexed by social cues, didn’t understand emotions- mine or others’, didn’t want to be comforted, and was inter-relationally tactless. (i.e if someone looked terrible today, I’d say “You look terrible today.”)

I know it must not have been that easy to engage with me.

me goofy at age 8
Me at age 7 1/2. I was never too photogenic. Or body aware, lol.

The world was so scary and so confusing, I internalized it all. As a result, my body erupted with physical symptoms of the anxiety I was suppressing. I had headaches and stomachaches all the time, sometimes severe.

I was looking over my elementary school report cards the other night. It seems that every year in most 9-week segments, I’d have good attendance, missing only 1 or 2 days. But in one quarter of the school year, there was always a huge spike, where I’d miss 9, 10, 11 days. This is a lot of days in a school quarter that has only 9 weeks. That means I regularly missed one or two days of school per week that quarter.

In 1968 my mother had me tested. (I think I remember the date correctly). This was the time before autism was in the DSM and during the time the refrigerator mother theory was prevalent.

I remember going to doctor’s offices and the person sitting in the big chair would try to get me to talk. Or observe me. I had many medical tests. The worst one was the spinal tap. A nurse held me in a Half-Nelson and another held my legs at the knees and they curved me and a HUGE needle went into my back. It hurt more than anything I’d ever experienced even to this day. I’ll never forget being held down and the cold steel table under me and the confusion as to why this was happening.

After all that was over, I got curious and eventually I asked my mother why and what and how come.

“What did the doctors say?”
“It’s psychosomatic.”
“What does that mean?”
“It means it’s ALL IN YOUR HEAD!!!”

My mother said the last part with such anger and disdain that she spit.

Psychosomatic means head-body (psycho-soma) connection. Psychosomatic disorders are physical symptoms that mask emotional distress. Unbenownst to the doctors at the time in our little corner of Rhode Island in 1968, the underlying cause was a different brain circuitry- autism. It is genetic and it tends to run in families. My cousin is autistic. I personally believe my father was also.

In the field of psychosomatic medicine, the phrase “psychosomatic illness” is used more narrowly than it is within the general population. For example, in lay language, the term often encompasses illnesses with no physical basis at all, and even illnesses that are faked (malingering). In contrast, in contemporary psychosomatic medicine, the term is normally restricted to those illnesses that do have a clear physical basis, but where it is believed that psychological and mental factors also play a role.” (source)

My parents interpreted the diagnosis as “hypochondria” meaning, not real, or the lay person interpretation of pychosomatic, meaning faked or malingering. They were kind of disgusted with me and left me alone after that.

At least I didn’t receive the most common diagnosis before Autism was included in the DSM, schizophrenia. The doctor was kind of on the right track. My headaches and stomachaches were a real physical manifestation of something in my head, which we now know is different brain wiring. Anxiety and confusion and sensory overload caused my physical symptoms.

I believe that my particular path’s diagnosis led from the 1960s mis-diagnosis of psychosomatic to the 1970s theory of the alexithymic brain, to the 1980s-90s diagnosis of Asperger’s or high functioning autism. (alexithymic brain and autism here, and here).

From Spectrum News, we read about my generation of autistic kids.

In the 1950s and 1960s, thousands of children who had autism were either completely missed or were saddled with the wrong label. The word ‘autism’ wasn’t included in the “Diagnostic and Statistical Manual of Mental Disorders,” the main reference book for psychiatry in the U.S., until 1980. …For these reasons, what autism looks like in older adulthood, and what it means to age with autism, are still mysteries, says Piven. “We don’t have that concept with autism that people live a whole life: What happened to them as they got older? This is just a huge area of no knowledge. There’s almost nothing written about autism and geriatric populations.”

Geriatric? Um, lol, OK. In my geriatric life I’ve gained experience that helps me cope. I have learned how to mimic appropriate social interaction. I have learned that people don’t like it when your face shows no emotion. Apparently my resting face used to  look melancholy, and people would ask me all the time why I was sad. It drove me crazy.  I’ve learned what I need in order to protect myself emotionally, financially, professionally etc.

Not having an “official” diagnosis as a child was a definite disadvantage. It’s OK, an official diagnosis didn’t exist when I was a child. Even today, knowing what I do now but still not having an official certificate to “prove” why I seem rude or grumpy or aloof etc., is also a disadvantage. People still say hurtful things, even ones who should know better. One person said to my face they don’t believe I’m autistic but just use the word to bully people.

I cannot imagine what moms and dads go through who hear people say these kind of things to or about their autistic children. My hat’s off to parents of autistic children. I am sure my parents didn’t know what to do with me!

I am who I am because God made me this way, and therefore I would not have it any other way. I have only spent 47 years with a semi-diagnosis and headaches and stomach-aches and angry parents and insensitive people. I will spend eternity with Jesus, glorified and perfected, being used as His servant in the exact ways He made me. The way He made me will be a gift to His society in heaven, without the physical manifestations from sensitivities and anxiety from misdiagnoses or misunderstandings. It’s a good trade. A very good trade, because God is good.

Asperger’s Are Us

I’m an early elementary educator who teaches children in regular education and also Special Education. I work with Kindergarten through second grade students. Some of the students I have worked with in the past have been formally diagnosed with Autism. They have landed on the Spectrum at greater or lesser degrees.

There is a heavy emphasis on helping children with autism, which is as it should be. Parents, families, the child, all need support and education.

However, I do worry fiercely for the students who are:

–diagnosed with autism early on and transition to adulthood where there are fewer external support systems
–have never been diagnosed with autism and are transitioning to adulthood and do not know why they feel or act as they do and don’t understand why they are so different from everyone else.

In other words, what happens when an autistic child is ready to leave his or her parents’ home and go to college…the military…find their place in a vocation? Where their life-long relied-upon support, understanding, help from parents, family, schools, therapists, doctors, and counselors have always been in place but now will dwindle to nothing? The support systems nearly disappear for the autistic adult. Achieving independent success as an autistic adult is a scary and difficult prospect. It’s hard for any person not on the spectrum but it’s very difficult for those who are. Managing one’s autistic self independently is bewildering and difficult.

I came across this documentary about adult Aspies from Massachusetts who had formed a comedy troupe. I loved it! The documentary focuses on the young men as performers, as people, who happen to be autistic. I have to say I did love the comedy. Their jokes…I get.

You won’t “learn” about Autism by watching this documentary. You will learn about four unique individuals who have dream and goals, work hard, have fun together, and are facing challenges. Just like everybody else.

After the movie finished, I searched for more information about the men. One of the men, Noah Britton, speaks to audiences about autism, and his TEDx talk in MA was interesting. Not the least is because it was captured on camera the moment he met Rachel as noted in the epilogue of the documentary, his girlfriend (or maybe his wife by now). He also spoke passionately against the use of aversives, using unpleasant stimuli to modify behavior and spoke specifically against the Judge Rotenberg Center. Methods such as loss of privileges, food denial, and shock therapy are still used at the Judge Rotenberg Center (JRC) in Massachusetts. They are the only facility in the US still using Graduated Electronic Decelerator (GED) directly on the skin.

My cousin Jennifer Msumba was a resident at the JRC and has spoken publicly about her experience there multiple times. In 2014 she spoke to CBS News, she testified before a U.S. Food and Drug Administration panel, and spoke up about her experience in many other places testifying to the horrendous impacts aversives have. She spoke about it this week in her Youtube channel:

Here, Jennifer speaks about what it is like to live with OCD.

Jennifer speaks with an articulate clarity and shining joy of life. As in this video!

Jennifer recently reached a life goal of becoming a member of Mensa. She plays four instruments, composes her own songs, arranges and performs cover songs, rescues poodles, and generally is amazing. Like the four men in Asperger’s Are Us.

Jennifer and the four men in Asperger’s Are Us have a good support system and seem to be making (or who have already made the transition) well. It’s often a bumpy road, and for those without a support system, it’s often a road littered with roadblocks, potholes, and crashes. It’s nice to see these men and women people doing and working and living and loving and laughing.