Autism Vox

34 opinions for What’s YOUR Diagnosis?

• Emily
  Dec 8, 2007 at 8:08 pm

  I think the similarities I share with my son(s) (and there are many) help inform me about how they’re feeling, what they’re experiencing. I also over the years developed my own coping mechanisms, especially for managing social interactions (social algorithms–If someone says X to me, my social algorithm file sends up Y, and I usually know to expect a Z response in return). And with that experience under my own belt, I can give my son a few tools of our filial trade. But I also pick up a lot of tips for my own use from the specialists who work with him.

  I was just talking with my husband about this today. Our whole family does its own thing. When my husband and I eat dinner at home, we read, on our own. We like it that way. And I think our parenting was like that; I clearly remember when my oldest was about 16 months old, I never forced completion of a “circle of communication” with him, and one reason was because I didn’t expect completion…I think he and I just figured what we were doing WAS some kind of circle of communication. But now, with our youngest on the edge of “something” himself, I work hard with him to close those circles of communication, getting him used to the idea of reciprocation, etc. And I think it’s helping me be a better parent for him while also helping me “train” to socialize and interact a bit better myself.

• ange
  Dec 8, 2007 at 10:33 pm

  I have been formally diagnosed as OCD/Depression. I cycle, which is now more defined thanks to getting older and hormones! My husband is and has always been a classic case of ADHD (impulsive) but never diagnosed to his knowledge. As we lay in bed at night awaiting the birth of our first child so many years ago, we would have fun deciding which of our traits the baby would get. I recall stating I hoped he would get his daddy’s eyes and great sense of humor. And then I said “With our luck, he’ll have my temper and your impulsivity.” And sure enough, we got our Bubba. Obviously he’s so much more than those few things. But I now realize that my temper (which came out as a child but now burns in my chest as an adult was my own self-regulation issues and anxiety). I hope I help Bubba learn to cope rather than repress. The little Mooser looks like me and is an outside observer just like me. Great problem solver like his momma and a warm heart like his daddy. He wants to be alone as much as he wants to belong…again like me. Bubba forgets what he’s saying/doing while he’s saying it like his daddy. Emotional and an innate fear of failure like his mommy.

  I had a bunch typed out here and then deleted it. I sounded like I was talking to a psychiatrist.

• Kristina Chew, PhD
  Dec 9, 2007 at 12:01 am

  OCD here (as in here, as in me)—-ADHD husband as I’ve often remarked—-a few more things on both branches of the family tree……….

• Kathy
  Dec 9, 2007 at 12:29 am

  OCD and ADHD for me. And I never actually realized I had these traits until they were diagnosed in my own son.Just thought that I was an extremely energetic type, who had trouble concentrating, as well as being a real worrier.
  Then the penny dropped…Lol!

• Emily
  Dec 9, 2007 at 12:57 am

  I didn’t share the family tree in my first comment, but…my father is dx’d OCD/MDD and has had severe problems with both. Mother is undx’d ADHD. My father didn’t talk until he was two years old and has exhibited certain emotional and social traits we all might recognize his entire life. My brother hears voices in his head when he’s extremely stressed.

  My husband’s family has never been diagnosed with anything; however, my father-in-law, while a very gentle and nice man, lacks much in the empathy/theory-of-the-mind department. He thinks–and often says–that things will be fine in a given situation because they always work out fine for him. He is a whole lot like Mr. Spock, really. He also appears to socialize based on rote scripts and very much prefers to be alone, doing his own thing more often than not.

  My husband has major unifocal obsessions, is preternaturally shy, feels very socially awkward (although he does not come off that way), prefers to be alone or with me most of the time, and to all but the very few who know him well enough seems like a dispassionate, almost emotionless person.

  I confuse myself. I’m unquestionably of an ADHD type–there’s no doubt–but I share many aspects of Aspie-ness, including an inability from my childhood onward to know when someone is making fun of me or subtly criticizing me. I read people well, but not so much from their faces. I had a huge difficulty understanding the socializing interactions of my peers when I was young, and to this day, some things remain mysterious to me. I rock and have tics. Some people call me “Spock.” I’m known for blurting out blunt observations in an sometimes untimely way. And on and on…

  We have always said that with each of our children, it appears the fruit did not fall far from the tree.

  And the weird thing is, as odd as we all are on both sides, everyone is successful and well educated and married and has children (the ones who are old enough).

• Kristina Chew, PhD
  Dec 9, 2007 at 1:12 am

  OCD from my side of the tree and some relatives with distinctly ASD-ness—-OCD, depression, and long-time psychiatric concerns on the other side of the tree (with a heavy dose of denial).

• VAB
  Dec 9, 2007 at 1:19 am

  The thing is, it’s only diagnosable if you think of it as a disorder. I think most people, including myself, are beneficiaries (or victims, if you prefer) of the human condition. We are creatures who are capable of dealing with most, but not all of our environment. We are rarely see absolute success or absolute failure in our endeavors. I’m sure a psychologist would have lots of labels for me. I’d have a few for the psychologist, too.

• Kristina Chew, PhD
  Dec 9, 2007 at 1:32 am

  Ha.

• Casdok
  Dec 9, 2007 at 4:34 am

  I think everyone has some autistic traits, but until my son was diagnosed we as a family didnt have a name for them!

• Kassiane
  Dec 9, 2007 at 5:18 am

  I’m autistic. Yet I socialize. In fact I am a very social autistic, yet quite…well…autistic.

  I’ve also got a dx of ADHD–my H is very prominent. Fidget city. And one shrink thought OCD because of the stims but I think he just knew not much about how stims and perseverations look in non engineers. Heck, take out the eating disorder and I’m practically this campaign (should we write them a ransom note for emetophobia to replace that? Nah. Too sarcastic. I’m surprised they havent made sarcasm a disorder yet…)

  Yet none of this holds me hostage. Autism doesn’t. ADHHHHHHHHHHHHD doesnt. The OCD traits don’t. Insomnia that has me posting at this horrid hour doesn’t. Hm.

  Now crappy attitudes in the name of “awareness” (is that, like, the equivalent of a middle ages indulgence? Say it’s for ‘awareness’ and all your sins are forgiven?). Demeaning people like me in the name of a meaningless construct, THAT has the potential to quite literally hold me and people like me hostage and even worse.

  Anyone live close enough to there to put up one of Bev’s (Asperger Square 8) Walls Against Hate on their building?

• Monique
  Dec 9, 2007 at 6:16 am

  I don’t really have an opinion - I don’t know enough to have one. My daughter is not even three yet, she has PDD-NOS, seems highly social, very happy, a bit compulsive, definitely a stimmer, and I’m still up half the night hoping I’m doing right by her and learning as much as I can while she receives services. I read about the genetic components in Discover between depression, autism, and schizophrenia and my immediate reaction was not something I’d leave out on the coffee table during a first date. I’m actually writing this comment really for Kassiane. Every once in a while someone out there tells me Emma is gonna be just fine and I believe it and can go to bed and get some sleep. Emma sounds a lot like you only three. Anyhow, thanks.

• laurentius-rex
  Dec 9, 2007 at 8:52 am

  Sarcastic personality on order.

• RAJ
  Dec 9, 2007 at 9:45 am

  A more interesting question would be, other than your child, how many family members have gotten bestowed on them a diagnosis of a pervasive developmental disorder by a licensed professional.

  My answer is none.

• Kristina Chew, PhD
  Dec 9, 2007 at 10:04 am

  But have any been sought……..

• Daisy
  Dec 9, 2007 at 10:31 am

  I often wonder if I am on the spectrum. My son is a prototypical Asperper’s kid, I believe my father had it, and I do see many of the traits in myself. Well, as Popeye would say, I Yam who I Yam. I might add, labeled or not.

• Laura Collins
  Dec 9, 2007 at 10:58 am

  I think diagnoses give us vocabulary to understand the full range of human behavior. I find it adds clarity and, truly, a better sense of our unique natures.

  It can also remove the guilt and the blaming - and help us say to our kids that we do understand, that we share some of these traits, too.

• KimJ
  Dec 9, 2007 at 1:27 pm

  I don’t have a proper family medical history due to being adopted. So, nothing neurological noted, just the grandparents having WWII disability, heart disease and diabetic.
  My husband’s line is very bizarre and there is a lot of interference with PTSD, alcohol, drugs, abandonment, etc. My husband couldn’t trace his paternal line due to the long line of Irish men that left their sons, who were raised by lines of stepfathers. A lot of early deaths due to drink and hard lives. His maternal line has a similar problem. All of the obsessive, non-emotional presentations were attributed to nervous breakdowns, PTSD and abandonment. Looking back, it appears to be a chicken/egg quandry.
  In my own past, I was always measured against people I wasn’t related to. So, I assumed all of my differences were due to be adopted.

• Maura
  Dec 9, 2007 at 6:43 pm

  My experience is tangentially similar.

  I’ve known for some time that I have sensory issues (some are profoundly . I am still not formally diagnosed (at all), but since it became clear that my older son has sensory issues, has required an IEP at school, and we are getting a formal evaluation this spring, my mother has FINALLY been willing to admit that my sensory issues are real, not jsut “in my head” or me “being dramatic” - which is something I have been trying to get her to acknowledge all my life.

  I suspect that my sensory issues are hereditary - my mother would react horribly to certain sounds and so would my grandmother. Also, everyone in my family cuts tags out of clothes and makes verious excuses as to why. My grandmother has actually resisted getting a hearing aid for her hearing loss, and she seems to enjoy the freedom from her auditory processing, except that she now has trouble communicating.

  Ironically, this seems to be the only thing my mom has a stigma attached to - we have, in our large extended and “adoptive” family, people with seizure disorders, depression, alcoholism, PTSD, amputations, auditory and vision impairments, alzheimer’s, paralysis - but these people are not stigmatized by my mother. I think it is that the issues my mother does not want to see are not clear-cut, there is no pill, there’s a spectrum, and it’s not curable.

  I don’t need to be cured. My son does not need to be cured - he just needs to learn how to deal with how he’s wired. I very thankful that I have more tools available to me, and less fear, then my mother did for me, so he does not have to learn to cope on his own, as I did. I also am learning new ways to deal with how I’m wired so facing the world at large is not so hard.

  There’s been progress, and I’m happy about that. I just want the stigma about the whole idea of being different to go away. It’s not catching. If you got it, you had it already. I’d like to tell everyone who’s afraid of a diagnosis that you can’t catch it from your kids if they get diagnosed, but you might learn something that makes your life make more sense.

• Maura
  Dec 9, 2007 at 6:45 pm

  I left out most of a sentence. This:
  “(some are profoundly .”

  Should read:
  “(some are profundly disruptive of my life).”

  Sorry!

• Regan
  Dec 9, 2007 at 9:27 pm

  As far as I know, I don’t have a PDD, but between my husband, myself and our extended family tree there’s enough genetic predisposition to make some probability:
  ADHD, hyperlexia, migraine, schizophrenia, eating disorders, LD, bipolar, depression.
  If he/I found out that we had some autistic traits on top of that, it wouldn’t be an entire surprise, based on our interests, professional choices, social quirks and irks.

  I did consider some of the above before we had children, but ASD as the full diagnosis was not yet something within the family tree, at least as far as anyone knew or would fess up to.

• Skov
  Dec 9, 2007 at 10:48 pm

  So glad to hear others with the same experience. As I grow to understand more and more how my son operates, I find more and more that I can relate. Certainly not as intense, but I have a good sense of when he’s reaching the saturation point on over stimulation, because chances are, I’m not too far behind him.
  I also watch other members of my family and see signs that maybe Cousin Patrick isn’t just an unfriendly kid, but perhaps it’s something more. I’ve found that when I get him one-on-one, I often can encourage some aspects of him that other family members don’t see. His parents are not interested in pursuing the issue, so I hope if there’s at least someone in the family that shows him that he’s not so “weird” or “alien” after all, it might help his self-esteem.

• Sarah
  Dec 9, 2007 at 10:55 pm

  One somewhat related issue that I’ve considered is, what happens when people who’ve been diagnosed as children grow up and want to have their own kids? I’m still too young to be thinking seriously about that, but as I and my current partner both have AS diagnoses, I hope that we won’t be looked down upon for reproducing when we know we have autism spectrum genes. Eugenics is a scary thing.

• Skov
  Dec 9, 2007 at 11:17 pm

  @Sarah
  Even thinking that someone might suggest that you not have kids because of a diagnosis or label…oooh, it makes my blood boil.

• Kristina Chew, PhD
  Dec 10, 2007 at 2:45 am

  @Skov, thanks for sharing that about your cousin—I’ve been reevaluating the “oddness” (so to speak) of various of my own relatives in light of Charlie.

  My husband and I figured a child of ours would have “something”—-I do see a lot of both of us in Charlie.

• Kev2
  Dec 10, 2007 at 9:55 am

  To add to the chorus: I was diagnosed with AS in Feb, at age 28, and have since figured out a lot of things about myself. (Perhaps there’s a bit of ADHD too, I was always a bit hyper.) But I was shocked to basically be the first one in my family to figure out who else in my family has sprinkles of ASD. I don’t know why, but I’m always shocked at how really messed up the rest of society is. I don’t know if there’s a diagnosis for that, or if it’s just ego.

• Eleanor
  Dec 10, 2007 at 12:39 pm

  I have hyperlexia, my mom has hyperlexia, and my son has hyperlexia. My son is the only one with an official diagnosis of an ASD. If I had to guess, I would say my mom might be diagnosable but that I wouldn’t quite meet the criteria. (Of course, one of the symptoms might be my inability to recognize my symptoms!)

• Patience
  Dec 11, 2007 at 9:49 am

  “feels very socially awkward (although he does not come off that way)”

  Oh, man, does THAT ring a bell! I’m told I’m the perfect diplomat–helpful, since I want to go into diplomacy–but I feel incredibly socially awkward and would rather just read a book.

  I’ve commented along such lines before, but the more I learn about autism, the more I question if I fall onto the spectrum somehow. My cousin has pretty severe ADHD, and, I suspect, could do with an ASD diagnosis as well. My mother tends towards bipolar, though not really enough for a dx.

  I was dxed at 16 with anxiety and depression; I had major panic attacks and pacicked over those to the point of driving myself depressed. I have always been extremely anxious, and continue to be, though I’m no longer under the dx. I rock, especially while studying. I repeat my end of conversations to myself after they happen, and read some words compulsively aloud. I certainly fit the fixed interests stereotype–and autism is one of those interests.

  I used to worry a lot about the possibility of a child with a mental disability. My girlfriend has CP, so I felt confident we could handle a physical disability–she knows what it’s like to be a child going in for corrective surgeries and endless pain and the social stigma of not looking quite normal. I was terrified of a mental disability, though, which led to an interest in autism. The more I learn, the less scary it seems. Difficult, yes, but no longer scary or bad. I think part of that is because I see a lot of myself in autists, but whatever the reason, I am profoundly greatful. My girlfriend has some traits, as well, so it doesn’t matter which of us gets pregnant and carries the child: we have at least a small likelihood of a dx of something in the future for our future kid(s). And I think I’m finally okay with that.

• Skov
  Dec 11, 2007 at 10:11 am

  Here’s a little trick I did as a kid. Whenever anyone started a conversation with me, even just a simple comment (”Bring in the groceries”), i would always say “What?” Drove people nuts. My parents had my hearing checked frequently. What I was too embarrassed to explain to them was that I actually had heard them, but I needed more time to process what they were saying. I never listened when they repeated themselves, but it gave me the time to figure out a response to the first statement.

  Now I find that when talking to my son, if I wait about twice as long as I think I should, he sometimes responds to the question in some way.

  I wonder how many people did/do something similar?

• Leanne
  Dec 11, 2007 at 10:12 am

  In retrospect, I had to do a lot of compensation as I grew up, especially in high school. I was always confused but managed to keep it inside my own head as I slowly learned how to act around other people. I probably could have been disgnosed with Aspergers.

  My son was diagnosed moderate on the autism spectrum. He needed his diagnosis to help him make his way/be supported in school. I don’t know if life would have been different for me if I had a category in which to place myself when I was growing up. It certainly wasn’t a bad life.

• Kristina Chew, PhD
  Dec 11, 2007 at 10:24 am

  Skov, I’ll remember your “what” trick.

• Norah
  Dec 11, 2007 at 4:23 pm

  You need to do something when you share your child’s diagnosis?
  I think that about 3/4 to 2/3 of my whole extended family on my mother’s side would easily get a diagnosis on the spectrum if they ever went in for one.
  I suspect it makes it a lot easier to raise your children if they’re just like you when you were little (and still now too).
  Of course, with none of them ever having a diagnosis (apart from eccentric, weird, agoraphobic, stupid, shy, geeks, nerds, or lazy), none ever had any treatments either. And all of them grew up, developed, found partners, and had kids! *shock* *horror* (with a lifetime of happily devouring gluten and yeast! :P)

• ange
  Dec 14, 2007 at 7:57 pm

  I do the “what?” thing all the time, especially as a kid. I know I have processing issues. I used to hear the question echoing in my head as I was saying “what?” and by the time I finished saying “what?” and the person was half-way repeating himself, I had processed the question and would say the answer– but I was interrupting the person repeating himself and then everyone would be confused. Used to drive my husband nuts because with his ADHD he had to be onto the next part of the question or he would forget where he was going with it and I am still processing what he just said. Now I know when I don’t need to process what he’s saying, so all’s good. ;)

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  Dec 16, 2007 at 5:13 am

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• Patience
  Dec 17, 2007 at 11:01 am

  “I wonder how many people did/do something similar?”

  Yet another thing I didn’t realize was unusual!

  I’ve been having some hearing problems lately (most likely both migraine aura-related issues and just allergies aggravating my eustachian tubes), so my processing has been worse than ever before. What I have found is that I often do hear what is said to me–even if it feels like I haven’t–but I need the repetition to be able to process it properly. Once I’ve had that, I realize I heard it the first time.

  It’s well-established family history that you cannot speak to my mom or me when we are reading, as we won’t hear you. This extends to all language based processing for me: I can speak, sing, listen to music, watch television, read, or write/type. I cannot do two of those at the same time. I often cannot write down what someone is saying, either.

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