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13 replies
  1. Barbara
    Barbara says:

    Once again your thoughts are poignant to my current life. My question is this, what/where do you go to get help when this isn’t relatable to me (the primary parent) and so all my ideas to manage the behavior haven’t worked (what I’ve read, who I’ve talked to, initial “tests”, etc). Obviously this is deeper than I was assuming but unlike your assumption above, the trait isn’t native to me (and looks different in an adult/my partner), so my attempts have all completely backfired and now we are all exhausted and frustrated…
    Also, I homeschool, so I don’t have those resources/evaluations from teachers.

  2. Chris
    Chris says:

    To the person with the question on what to do; even if homeschooling, private evaluation (often called a psycho-educational evaluation) is something one can seek out for oneself or a child. We have done both, in our family. Initially for my child I looked for someone who was familiar with assessing a child who is both gifted as well as possibly on the spectrum; this can be difficult to parse out considering that many traits/quirks of gifted kids can overlap with traits of folks on the spectrum, or at least look that way (ex: becoming frustrated with someone who can’t keep up with your train of thought and dismissing them – gifted person, sometimes….becoming frustrated that someone keeps steering the conversation away from your particular interest and dismissing them – autistic person, sometimes.)
    I even have a child for whom eye contact is not really a challenge, yet many other things that ring the ‘asd’ bell are present, once you start considering it.
    Pro tip – if you seek a diagnosis for a disability, this is very possibly covered by insurance, at least in my experience. I know a lot of people have a hard time around the word disability for children that seem pretty ok most of the time, but not being able to connect with people, because you don’t know how, can be extremely difficult – this can have a huge impact in terms of finding work, let alone finding meaningful work. (see article above).

  3. Jim Grey
    Jim Grey says:

    My youngest son’s kindergarten teacher was the first person to apply the Asperger’s label to him. But it was crystal clear that she didn’t like our son. I never knew that a teacher could treat a kid so shabbily out of basic dislike. So we blew off her amateur diagnosis.

    Around the time his mom remarried and moved him to a distant suburb, his performance in school tanked. I thought surely it was because he was upset because of all the change in his life. But the new school applied that label again. Frankly, I figured his mom took him to the practice in town well known for handing out Asperger’s dxes like candy because it was easier to get him dxed than to admit that our son was pissed because she married a man he didn’t like, who moved him an hour by car from everything he ever knew.

    I made an appointment with the psychologist who ran the practice to discuss. We talked for fifteen minutes about it and finally he said, getting up to dismiss me, “Well, Asperger’s is hereditary. He probably got it from you; your mannerisms and behavior all say you have it too.”

    What an unprofessional ass.

    And the help my son got really wasn’t very useful. An IEP at school, with assigned resource teachers that changed every year. Some of ’em couldn’t give a damn. One was stellar. But even the stellar one didn’t make that much of a difference for him. His mom’s next marriage was busy failing and from where I sit the difficulties related to that were his primary problem in school.

    His mom got her life stabilized and then our son started to do better in life. I think he just found himself in environments at his mom’s home and in mine where he felt secure and accepted. It gave him a platform to figure stuff out for himself. Two years ago a lot of stuff just clicked for him and he really started to surge.

    I was talking with that son yesterday about his college aspirations. He’s applied to a bunch of schools but wants to go to Purdue and study mathematics next fall. Or maybe computer engineering; he says he really enjoys the hardware side.

    I told him that I’d recently read a statistic that 90% of people on the autism spectrum are unemployed, but that I didn’t see him being one of those people. “Well, I have a really mild case,” he said. Perhaps, but I think it’s more important for his future that his parents got their lives together finally, and through that provided a place for him to feel secure in himself so he could find his own way.

    • Penelope Trunk
      Penelope Trunk says:

      I think people with Aspergers have no idea how it will affect their lives until after college. Before college everything is about grades and parents. So if you get good grades it deflects from Aspergers-related problems. And if you have unstable parents it deflects from Aspergers-related problems.

      That covers pretty much all kids with Aspergers. Also, people with Aspergers usually have depression and anxiety as well. But of all ages, depression is most common in people in their 20s, because it’s such a hard time in life. So it’s easy to say someone is depressed after college because of typical twenty something problems.

      And then people are not dealing with Aspergers until age 30 when they don’t have a job or a spouse. In fact, I think this is the most common way for people to start taking Aspergers seriously.

      It reminds me of my younger son’s birth defect. He was born with half his face deformed so his eye was too small and his mouth was twice the size it should be. He had to have plastic surgery when he was one to close his mouth. And he had subsequent surgeries.

      But here’s the amazing thing: Many people who looked at him as a baby saw nothing wrong. He had a huge smile because his mouth was so big. And I realized that people put up with a lot more from younger people than older people.

      A baby can have a gaping hole in their face. A teen can have huge anxiety. A college kid can have no social skills. We put up with so much. Until someone is about 30 years old. And then we see the mess very clearly. I don’t really know what to make of this. But it’s definitely something I’ve noticed.

  4. Cay
    Cay says:

    Those pictures are so funny to me. I eat all of my meals that way. Everything has to be arranged into geometric shapes, and I adjust and rearrange the ratios as I eat.

  5. Chris
    Chris says:

    Mild or not, people can still run afoul of misunderstandings that can really wreck what might be an otherwise promising job, or even career. I would be interested in seeing more information available on what accommodations people with a formal ASD diagnosis might be able to establish at work, legally protected accommodations, or otherwise.

  6. Laura
    Laura says:

    Didn’t your father physically and sexually abuse you? Why do you want him to visit you or your kids?

    • Penelope Trunk
      Penelope Trunk says:

      Yes. Good question, of course.

      People always ask me if I have any limits of what I’ll write on my blog. My whole family reads whatever I write, so I probably wouldn’t write this on a blog post, but I think I will write here, in the comments; the discussion about how to deal with a parent who abused his kids is a good one.

      I work hard to forgive. My father has a blind spot or something about sex abuse. I look at it like brain damage. He has apologized a lot for my childhood, but he has done awful things again, when I was an adult.

      I don’t know what’s come over me, but I’m just going to give examples. He came up behind me when I was alone, at my younger brother’s wedding and hugged me. And I said, “Dad, remember? Its against the rules for you to rub your penis against me.”

      And he said, “Oh yeah. I forgot. I’m sorry.”

      Another time we were walking and talking and he said, “Sex with children has been fine throughout so much of history. We shouldn’t judge people differently just because they live in a time when society doesn’t approve.”

      I know you are thinking he’s an absolute lunatic. Probably he is. But he genuinely is like a retarded person. For example, he is not allowed to teach in public schools because of his police record, but at age 60 he went back to school to get a teaching degree. Which he was then surprised he could not use. And remember: he graduated from Harvard. He is not stupid.

      So I try to spend as little time as possible being angry at him. I focus on being a kind, considerate, generous person so I don’t damage another generation. I want my kids to know my dad because its their family and their history.

      That said, my kids only see him two or three times a year, usually at big events. My kids know to never be alone with him and they have rehearsed what to say to unwanted touching. I feel bad saying this, but sex abuse runs in families and I have no idea where else it might lurk. My kids are prepared.

      When my dad comes to visit he stays in a hotel. At our house my husband stays with him the whole time – he shadows my dad so the kids or I are never alone with him. I don’t think my dad notices.

      I don’t want to cut my dad off. I don’t think that would feel like forgiveness to me. And i want my kids to see that anyone can forgive anyone and it’s a good choice to make.

      Penelope

      • Rolfs Judith
        Rolfs Judith says:

        Penelope, this is a very admirable processing of his behavior and intent. I’m impressed that you realize the value of continuing a relationship with him and modeling forgiveness for your children while simultaneously protecting them.

  7. diana
    diana says:

    What exactly do we need to do to help kids with Aspergers? My daughter has it and I’m not sure what else to do. She gets services through her school, but I want to homeschool and I’m afraid to lose it. I try to talk to her about social situations at home, to help her rehearse things like “Don’t go into a stranger’s van to tell him that he shouldn’t be talking to you.” I’ve read a lot of books on what the challenges are, but I don’t know where to go for the interventions. I haven’t told her she has Aspergers or explained it to her other than “some people are smart in some ways and some people need help in other ways.” I don’t know if she knows exactly why she gets services at school.

  8. Teryn
    Teryn says:

    I think you make a good point. You cannot deal with a issue until it is addressed. How painful it is for some people, myself included to accept that our kids have challenges that may impact their life in a negative way! I know very loving parents that refuse to address their child’s troubles in school or socially because they are afraid that a label will damage their self esteem. Meanwhile the child has low self esteem because they are an outcast who gets in trouble often. The label is just a way to open up the door for insurance or schools to pay for services. Disorders that impact social function can be worked with. None of us are stuck where we are at and we all have the ability to learn new things. But we first must accept that we need to learn them. Then we need to find experts who can teach us. Finally we must practice, practice, practice.

  9. amber
    amber says:

    i never had a blog entry hit me so hard! my father, who had asperger’s, died in september. so much of your dad was like my dad. we live with a 23-year-old family member who at one time was a neighborhood kid; we were sure he had asperger’s, his family was unable to provide him any support at all, and he eventually joined our household full time. and my own kids (both neurotypical) are now homeschooling. i am going to be looking at your blog a LOT — you hit it on the head with the asperger’s stuff, ESPECIALLY about how being a great student does not translate to getting and keeping a job. (we are exactly there.)

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