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There’s Still Some Catching Up To Do…

Photo by Fortherock via Flickr

There were tears in my eyes tonight while I watched the film, “Refrigerator Mothers” on the PBS program, POV.

From the 1950s and persisting as late as 1990, psychology students were learning that autism was a result of mothers not bonding with their children — of them being detached and frigid. It’s heartbreaking to know how wrong so many experts in the medical profession could be, and how much anguish “experts” brought to mothers of autistic children in the decades after these disorders were recognized, but before autism was more correctly identified as having neurological origins.

During one of the film’s personal stories, I felt more than compassion. I felt a kinship of sorts because I recognized the mother’s feelings of confusion and underlying disbelief, eventually culminating in anger at the way she had been harmed by the therapy professionals subjected her to for the frigidity disorder she never had to begin with. I recognized some of the struggle in her story because it reminded me of the difficulties that high functioning disorders, such as Aspergers, bring to a marriage, and how spouses (disproportionally women, possibly because there is a higher instance of these disorders among males) can be mistreated by counselors who don’t understand how these problems present.

From different marriage counselors, I heard that I was being too sensitive and much too quick to label my ex-husband’s behavior as abusive. That was probably due to his honesty, sincerity and intense sadness as he recounted to them how he felt in our marriage and the happiness he wanted to us achieve. Our counselors didn’t have the skill to figure out that he was unable to comprehend or adjust any contributing factors in his own behavior, or they took much too long to figure it out. On the other hand, there I was — anxious, upset, and close to anger about being mistreated and unheard. They decided I must be the one with the problem. Therapists told me that the answer was for me to listen to my husband more, and to practice talking less. My ex would be much happier by our next appointment, because a person with Aspergers often mistakes their one-sidedness in conversations and other social situations as being the ideal way relationships should be. The only way I survived those weeks was to shut down my emotions and try to stop wanting anything. My husband couldn’t not have Aspergers, but my life changed, or shall I say was given back to me by degrees, after he was correctly diagnosed and I realized that I wasn’t a horrible person who couldn’t see how her horribleness was hurting the man she loved.

Why Are You Going Away? by Beni Ishaque Luthor via Flickr

Because high functioning autism wasn’t being diagnosed when many of today’s affected adults were children, they and the spouses who fall in love with their intensity and concentrated attention without knowing what it could mean, can find themselves in a quagmire that is often exacerbated by inexperienced professionals who don’t specialize in those conditions. No wonder a part of me identified with the women in “Refrigerator Mothers” who tried so hard but were criticized and mistreated by the psychological community that should have been helping them to cope.

It seems to take a long time for certain perceptions to change, but if we can share our stories, whatever they may be, we can reach out to each other here in cyberspace and at least offer solidarity while we wait for the professionals to catch up.

 

 

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18 thoughts on “There’s Still Some Catching Up To Do…

  1. Wonderful post, and heartbreaking to think that there are people out there going through this right now. It amazes me how many opinions are put out by people who are about as current as those who believe the world is still flat. It also amazes me how strong those people, like you, are, who survive in spite of ‘therapy’. I know many very good therapists, having once worked in a mental health agency, but I also know that one not-so-good therapist, can do a lot of damage. In some cases it’s because action is based on the current science, that eventually will be proven to be flawed. But in other cases the damage is done by those who refute current science and create their own theories. Like the person who told me having cancer was my fault because I didn’t think ‘happy’ thoughts. What a world we live in.

    • Thanks for your suppport, Lisa. You’re right that there are a lot of very good, knowledgeable and supportive therapists out there, and I’m sorry I didn’t make it clearer how much I believe in the value of therapy. But I also agree with you about about the damage a not-so-good therapist can do, as well as the current bandwagon that says we’ve brought everything, including illnesses like cancer, into our lives with our ‘negative’ thoughts. I believe in positive thinking to help calm the mind and help us see our true choices and perhaps affect the collective energy of the universe, but I am appalled by the “Secret” sort of view that dishes out blame for not thinking specifically ‘happy thoughts’ that would make our lives extra nice if were just ‘smart’ enough to think them. So many awful things have happened to very nice people (and innocent children) that that silly theory has disproved a million times over. I wish people would get over that “you asked for it” theory. I’m sorry that person flung it at you. Thank you so much for adding to the conversation.

  2. What scares me the most is
    when someone tells you that drugs
    shouldn’t be perscribed to psyc patients
    ever. Now I do feel that people are too
    eager for a magic pill, but there are some
    cases where it can mean the difference
    between feeding the cat and setting fire
    to it. Someone should also stop the
    religious lunitics that think they can
    cure any crazy with kids and a
    spouse.

  3. I have always put my faith in doctors, policemen, therapists. When any one of them go ‘off the rails’ or fall short of what their very difficult careers demand, the disappointment and danger makes for a deadly combination. I hate to think of you in that quagmire, S.

    • Thanks, Aubrey. I feel lucky to have gotten out of it. Now when I need to trust someone in one of those very difficult professions, I remember to trust myself too, ask questions and listen carefully to their answers.

  4. I can’t imagine the reserves of strength you had to draw upon and the loss you felt when you realised that the man you loved was ill. We look to professionals for guidance as experts in their field but, when all said and done, they are human too. I’m not excusing poor diagnosis when they should know better, just acknowledging that they are not perfect, I guess. The downside of this is that you need them on your side when you have the strength of your convictions and that can become a challenge in itself. Well done for staying strong, Ré. I guess you all came out the other side of this changed but wiser.

  5. Hi Sparks,

    My gut response to this is damn people are stupid. When you think of how so called doctors used to bleed people and other insane things it makes you wonder. Of course, today people think such behavior is merely the beginning of modern medicine and psychiatric care. Modern medicine is great, right? We believe that because it is comfortable to do so and we want someone (anyone) to give us answers and diagnosis to soothe us. It is unfortunately, not true and history bears me out. A close friend of my family is currently hospitalized as he lost 80% of vision in his eye and has severe pains when walking. This occurred in the space of 1 week. He’s been in the hospital for 3 weeks and the STILL don’t know what’s wrong. He says they are experimenting on him and they are right.

    I empathize with what you went through and am sorry that you were told by professionals to subordinate your needs. As well as sadness, their must be anger. Don’t let it fester and thank you for shedding continual illumination on this subject. You can email me anytime :).

    Hugz,

    C.

    • Thanks, Coco. I appreciate your support. I also know people who are struggling within the healthcare system, and that is distressing considering the advances science continues to make. I know the majority of people are helped by healthcare professionals who are caring and try to be truthful about what they can and cannot do, but obviously there’s still a lot of catching up to do. I think the financial gap between what is possible and what is available, has to be addressed in favor of helping us all to be healthy, not just some of us.

  6. Oh my goodness. Thank you for sharing that. I am sure there are marriage counselors who are good and helpful, but at least some can’t seem to see the whole picture. Those counselors only make things worse by encouraging damaging behavior.

    You deserve something much better than what you had in that marriage. I hope you find (or have already found?) it.

  7. I just read this again, and I’m struck by your words. As the mother of a child with Asperger’s, I worry about his future relationships. Will he be able to find love, marry, and then sustain a marriage? I honestly can’t imagine being married to someone with his condition. It would be more like being a mother than a partner. I’m so glad you are able to find peace with it now.

    • Thanks for reading this. I really appreciate your comment. I hope my ex still has his health insurance because the wonderful, pull no punches psychologist I’d found who specializes in autism spectrum disorders, was helping him come to grips with the fact that his condition would always impact his relationships. Before my ex gave up on us (I hadn’t yet, even though it was hard and was, as you say, very much like being his parent) he was still struggling with not understanding why our relationship couldn’t just be the way he wanted it to be. But a part of him was calmer because he finally knew this very important thing about himself.

      I know that each person with Aspergers is very much an individual, but the fact that there are so many marriages where one has this condition highlights something I think is important. The intense focus a person with Aspergers can have on their potential mate, can’t be part of what draws that person to them. If that person accepts that it will drop sharply (the focus, not the love) then they might have a chance. The spouse who can stay healthy in a relationship like this, needs to be the kind of person who doesn’t need a consistently demonstrative or attentive partner, one who doesn’t need to be emotionally supported by their mate, and one who can be both mother and father to their children when necessary. It’s a tall order, but some marriages are handling these issues.

      I hope there’s lots of happiness in store for your son. One thing he has that my husband didn’t, is the very knowledge that he has Aspergers. With more knowledge comes more potential. I wish you peace and happiness.

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