Q&A: special needs child

Katie writes:

“I have a 3-year-old son with autism and figure at least some of your readers have experience with special needs. My boy was diagnosed as having moderate autism just before he turned 2, and I am so proud of how far he has come. (I could write a whole separate e-mail about all of the therapies and interventions he has endured.) He is very verbal now and, though he is in a special preschool class, I believe he will be mainstreamed into a regular classroom by elementary school and be almost indistinguishable from his typical peers.


My dilemma is whether I should ever tell him about his autism. He hears me speak of it often now; I have no qualms about telling someone he is on the spectrum, partly because it explains some of his behaviors that new friends may find odd, and partly because I am so proud of all the progress he has made. But he is getting closer to the age when he will really pick up on what I’m saying when I speak to others about him.


I don’t want to completely ignore it or act as if it never happened or make it into this big secretive talk–“Son, let’s sit down for an important talk about something terrible about you.” It is a part of who he is, a part of his past and present. I guess what I’m looking for is wisdom from others who may have gone through this before. Do I stop mentioning it so much? Do I wait for him to ask me something down the road? Do I phase out the word “autism” as his symptoms show up less and less?”

Hmm. On the one hand, I feel like he’s going to know there’s something different about him. On the other hand, you don’t want him to grow up thinking there’s something less about him. So how do you balance the two–acknowledging that he’s got some things that are different about him but also letting him know that he’s great the way he is?


I wrote that first parapgrah three weeks ago, and have been sitting on this post ever since, trying to figure out what to write. The fact is, I don’t know what it’s like to have a special needs child. It would be disingenuous of me to talk about it, I think, because I’ve never had the experience of parenting a child who isn’t always going to be received easily by the world. (I definitely think I have a special responsibility in raising two white men in America, but that’s a different post.)


I’d love to hear from moms and dads of kids who don’t fit neatly into the boxes that we expect kids to fit into. Not just kids who have autism, but kids who have any other kind of developmental issue, kids who have chronic illnesses, kids who look different.


How do you manage their “issues” (treatments, therapies, medical inteventions, etc.) while still loving and respecting them as people? How do you straddle the line between living your experience as the parent of a special needs child and honoring their experience as a special needs person? What if the “special need” is something that isn’t recognized by the larger world (like being a highly sensitive or spirited person)?


Please talk about it. If you want to link to other supportive areas of the internet, please do. (If you type in the http:// before the www part of the address it’ll automatically hyperlink so people can just click through your comment.)

0 thoughts on “Q&A: special needs child”

  1. My 13 year old nephew is on the spectrum {PDD}. He was diagnosed later than your son and has only been fully mainstreamed this year.I am not sure that I have a lot to add in some ways because I do not live close by and I don’t know how his parents dealt with the day to day stuff.
    Still, from my vantage point, he interprets the world differently than I will ever be able to understand and so part of my pride in who he is comes from his ability to learn two {vastly different} sets of rules for living. The ones that are in his nature, and the ones that have been explained to him by people that he trusts.
    I think that there is a need for a conversation about the fact that he is autistic because it gives him the chance to know *why* he has two sets of rules and why other kids connect to each other differently than they connect to him.
    I think part of feeling *less* as Moxie put it is the mystery of how everybody else does it.
    This year – he didn’t miss a day of school, he had no discipline problems, and he made the honor roll for TWO quarters. I have a difficult time having a conversation with him but he is a GREAT kid.

  2. I used to be a special ed teacher, and during my student teaching there was a high school student whose parents had never shared her diagnosis with her. She was autistic, but thought she just needed “extra help” and that’s why she had an IEP, etc.The teachers were able to comply with the parents’ wish not to tell her until she became 18 (which happened to be the year I was there). Kids with special needs are eligible for services until they’re 21, and at 18 they become their own guardians. At that point the teacher of record felt compelled to share the girl’s diagnosis with her. The parents, of course, fought to prevent this from happening, but in the end the law and the teacher won, and the girl had the worst 18th birthday gift ever – finding out that there was something “wrong” with her.
    I think the parents tried to take the teacher to court to prevent her telling the girl, but they were unsuccessful, because she was “high functioning” enough that she was capable of becoming her own guardian at age 18.
    In light of this, your reader probably wants to make a plan to discuss her son’s diagnosis with him at some point, when she feels that he’s mature enough to understand, and before the school steps in and spills the beans. Otherwise he, like the girl I knew, will feel very deceived.
    Amy @ http://prettybabies.blogspot.com

  3. Like Moxie, I can’t speak from direct experience. However, a very good friend is in almost the same situation. Her son was diagnosed with ASD at 22mo., and the original prognosis was pretty bad. They suggested Early Childhood Special Ed and when he was put with kids who were more severely challenged, he regressed pretty quickly. She pulled him out and initiated a controversial (at least among the autism community in MN) treatment plan that required 3 different thereapists in the home every day. He’s in first grade now, in a mainstream classroom, with very minor special ed accomodations. If you met him, you’d never know he “has autism.” But while he rarely exhibits symptoms, the Mom realizes that others could crop up any any time as his physical and cognitive development continue. So they do talk about it. I am not sure how often they actually use the word autism, but if she didn’t say anything, he’d question the appts., meetings, etc. Given their treatment plan, he knew something was up, so they’ve just always talked about it in terms of how to make him feel better or learn more easily. It’s not something he’s “faulty” of. Almost like (and I’m not trying to discount ASD!!) someone who has frequent PT appts to correct another physical problem isn’t “broken,” but simply needs a little extra help to make them comfortable and let them be able to do all they can.Hugs to you!!

  4. I’m just going to approach this from the point of view of someone with a disorder that it would have been nice to know about growing up (had anyone known it) and who lives with some differences each day.I would talk about it only as it comes up. But I would definitely talk about it if something comes up, because otherwise it’s ignoring that there are (at that time, not globally) issues that can be easily explained.
    So instead of “you have autism,” it would be more like “Oh so you didn’t understand that your friend was frustrated. One reason for that might be that your brain works a bit differently. (Moving on to a solution…)”
    Then if your child asks, as he probably will at some point, why, you can give the rundown on autism.
    In other words, follow the child. But do follow.

  5. My elder son is 5 and is autistic. He pays a lot of attention to what is said, so early on, I started saying this:You hear this word “autism” a lot, right? That is something that some people have, and their brains work a little differently than other people’s. It’s not a good or a bad thing.
    The main thing to remember is I love you exactly the way you are, and I am working to figure out ways to help you learn more easily.”
    The hard part is people come up to me and ask if my younger son “is ok” and when I say he’s not on the spectrum, they heave a big relieved sigh, which translates to Buster Brown that he’s *not* ok. But I can’t control other people.
    We tell our kids as often as possible without going overboard that we love them exactly the way they are.
    Another hard part is some of my older son’s classmates have said to him, “You can’t play with us, you don’t play right.” Here is where a good educational team helps. His teacher intervened and they worked it out so they were playing happily together. But my heart aches over that and future instances of harsh reality.
    The biggest revelation for me has been, over the last few months (about 18 mo after his diagnosis), I started seeing the benefits of his way of looking at the world. I started seeing it all as a gift, instead of a handicap. Every child is different and it may not be that blissful for some; it sure took me a while (after the 40+ tantrums a day eased up!).
    Our family tries to talk things out, more info is a good thing. But it can be overwhelming, in so many ways. But I recommend being forthright, in your way, in a gentle way, before a rude outsider does it for you.

  6. I am so grateful for this post! My second child has speech apraxia (which is a speech delay … he hears fine and understands EVERYTHING, but can’t speak properly). He will be 3 in Sept and so we will be starting on the IEPs and school system soon. I have been wondering lately how much we should talk about it … but I want other people to know that he is normal, he just doesn’t talk ‘correctly’. But I am so afraid of when he gets into school and what if his speech hasn’t developed? I guess every parent feels this way though. But I am worried that if we don’t explain it to him and later when he is older and his older brother teases him about it, how will he feel? I fully expect that to happen too – you know how siblings are!!! I guess I just want my kids to never be teases, but, again, every parent feels that way, huh?Well, the above posts have helped me though, my instincts told me to be open about it … and it sounds like from the replies that is the right thing to do.

  7. We’ve got the health issue angle, but it can play into behavioral issues.I just talk about it whenever it comes up. But I make sure that’s not ALL I talk about, especially to others where the kids can hear (though at the same time I’m trying to expand awareness of a common but often misdiagnosed issue, so I say more than I might otherwise). When the kids are tangentially involved in the conversation (by being present), I make sure I bring in their interests, strengths, joys, etc.
    It’s interesting that family members who seldom see us mainly want an update on the health angle – what’s up lately, are they growing well, how do you manage the diet, yadda yadda. But family who are nearby, who see it all going by, ask a question now and then, when it is relevant, like, ‘can he have greenbeans?’ and ‘are you seeing improvement with this probiotic therapy?’ but mainly we talk about the horseback riding, or how school is going, or the usual stuff.
    It ends up being rather a lot like a diversity issue to me – that we don’t decline entirely to speak of, say, race/ethnicity around the child who is different from the majority in the group, but we (hopefully) talk about it in terms that are applicable to the reality of life, and *not* to what goes on inside the heads of the adults. That is, we talk about if there’s anything RIGHT HERE, or RIGHT NOW, that may be an issue – does the Indian child have any dietary issues that we need to accommodate at this party? What do we say to the other kids when the girl from Nairobi refuses to have the fingernails of her left hand painted? So it ends up being for us, ‘What are the ingredients in the ice cream cake?’ not ‘will your child be okay at the party, is he fragile, and please give me the rundown on his diagnosis while he’s standing here looking at me’.
    At the same time, like with diversity issues, I decline to make him the poster child du jour for his disorder. He’s not expected to tell everyone else how it works, or be the representative of the issue for everyone. He is just expected to know how to manage himself to the degree he’s able, and I manage the remainder up to the amount required to allow him to participate. :shrug:
    Does B know there’s ‘something different’ about him? Sure. He would have a hard time *not* realizing it, since it affects choices about everything that goes into his mouth. If it was more subtle, but something I’d still expect him to be responsible for as an adult, I’d still make it an open topic for and with him. He needs the layers of understanding that will build up over time, so he can understand the process.
    And he needs to know that no diagnosis is an excuse. It may at best be a reason, but it is not an excuse. The fructose malabsorption, if he gets too much fructose, totally messes with his brain chemical balance (fermentation stops absorption of tryptophan, which prevents normal formation of serotonin and melatonin, and hey-presto, totally rage-filled out of control child). He can become quite a challenge under those conditions, to everyone including himself. But regardless of why he struggles, his behavior is still his responsibility. Just as it would be our responsibility to act ethically EVEN if we were struggling financially and found ourselves standing next to an unguarded bag of diamonds. No matter the situation, the responsibility is still up to us. If we blow it, it’s still our job to handle having blown it. Same for him. That covers the ‘I’m different so I can get away with stuff’ side of the Label Line.
    And then there’s the ‘I’m different so I’m not as worthy’ side. Loving them as they are, and showing it, and supporting them not with random praise but with specific detailed praise, showing joy being with them, setting them up to succeed, all those will prevent the label from being the limit of value that he chooses for himself, as the foundation. With adults, just moving on from the subject and into ‘real life’ subjects sends the same message. With other kids… trickier. Finding a good school that doesn’t permit name-calling or exclusionary behavior as a rule is the first place to start, perhaps. And also teaching the skills needed to respond to the inevitable questions and challenges is also important. My kids have all had various reasons they’ve had to say to another child, “I don’t eat that, because I would get sick if I did.” So far, that’s working fine.
    Last thought (I hope!): There’s a difference between finding out what the diagnosis is AT LAST (my sister was diagnosed as Asperger’s in her late 40’s, and it was a huge relief), and finding out that everyone ELSE knew what the diagnosis was and didn’t say anything about it. One is a relief, the other is … well, I can’t picture it not sucking.
    I’d think it would be entirely okay to say that some people’s brains work one way, some people’s brains work another way, and both have their strengths and weaknesses. Yours works in the way people call autism spectrum, which means you’ve got a lot of strengths in one area, and had to have support to learn the skills in the other area. You learned the other skills really well, but it may sometimes take extra effort for you – but effort is just effort, and you’ve succeeded.
    Then move on to the whatever’s relevant as the real life example/situation.
    And I could still be wrong with that approach, but that’s how I’d run it, I think.

  8. My college roommate’s son is autistic, and she was recently on a panel at BlogHer that dealt with blogging about special needs kids/parenting. I’m not sure I’ve ever seen or heard her write/talk about this specific issue, but since her son is older (7), I’m sure she has had to deal with it. Check out her blog, which also has links to all of the BlogHer panelists, at least a few of whom I believe are also parents of children with autism.http://www.squidalicious.com

  9. First, my child has not been diagnosed with anything to this point in her life, so I cannot speak from that aspect. (Although we do have good friends with a son on the spectrum.)But I highly recommend reading Temple Grandin, an animal scientist who is a person with autism and an author. She’s pretty amazing in how she can explain the ways in which her thinking is different from others. (I would link to her book Thinking in Pictures, but instead you should click the Amazon link that Moxie has and search for it once you are in Amazon.) I think hearing what she has to say about how she thinks differently might help you talk to your child about the ways he thinks which can be different from other people.
    I also wanted to say that I wish someone had figured out that I had Seasonal Affective Disorder when I was younger and told me and worked with me. I didn’t figure it out until I was an adult, and then it was a huge “aha” moment. My whole life finally made sense. My moods, my tiredness, my depression, my difference from others, which all happened to take place in the winter months. I believe that it would have been so much better to deal with if I could have understood what those differences were, that there is a reason behind it (brain chemicals which are affected by sunlight), and that there are ways to treat it and cope with the symptoms.
    Surely, the discussion has to be age-appropriate and one should be careful of how you frame the whole discussion, but I think that having the huge “aha” moment later in life made me realize how much easier things would have been if I (or anyone) had just known. Also, like hedra said, I couldn’t imagine if everyone else had known and no one had ever told me.

  10. This hits very close to home… now that we know that Cole (also 3) isn’t likely to have an episode related to his inborn error of metabolism, we wonder what to say to him about it all the time. It still isn’t a good idea for him to fast and it is certainly something we will have to put on all of his school and day camp records and the like. Plus, he has a scar from a skin biopsy on his back that is pretty clear.Someday, he might wonder why he had to see doctors to look at his heart or his eyes, since I know he remembers all of those tests, but for now at least he’s not aware that he’s been through more medical melodrama than any other kid. I’ll be following the comments to see what BTDT parents have to say, but what I take away from our experience (the non-serious chronic condition, the spontaneous triplets, the cousin with severe kidney reflux, the cousin with Downs Syndrome) is that there is something medically unusual about a lot of kids, which we hope to use to put things in context at some point.

  11. Oh, the other thing I wanted to put out there is that hubby and I have this conversation about whether or not we should let our child(ren?) know that we needed fertility treatments to concieve. In my mind, I want to treat it as normal. I’m all about laying things out there and making it all part of the varieties of normal life. Hubby worries that it might somehow affect the child.I guess I think that the more we normalize everything (autism, fertility, depression, etc.), the more acceptable it will become as our kids grow up. Can you imagine living in a world where these things are looked at as big secrets but instead are just part of the diversity that each person has in the diverse world?

  12. My kids are not on the spectrum but both are special needs.My younger son, 3 has multiple severe food allergies. My older son, 4 1/2 has ADHD, fine motor skill delays, and speech processing issues.
    My older son was just diagnosed and this post is so timely for me. I don’t have much to add but I am reading every response.

  13. I have 1) a younger son with food allergies and intolerances, and 2) an older son with both anxiety and significant sensory integration issues, both of which (anxiety and sensory issues) affect how my older son responds to things. I try to handle both kids’ issues similarly, as medical useful information for them to understand. We also explain similarly that my niece is “on the spectrum”, which, in her case, in part means that it is taking her longer to learn to speak. So just as we explain to my younger son that he can’t eat something because he’s allergic, we explain to my older son that he’s using baby talk or getting silly because he’s getting overstimulated by something, or that his legs tire easily because he’s got gross motor learning still to do.I think it’s a distinct shortcoming in our society that we treat medical differences that affect behavior and learning with so much stigma, and I never want my son to think I share that view. But we also discuss how others might, and how he and we can try to handle that.
    So we talk in developmentally-appropriate-to-our-child ways about those issues, when they’re affecting his behavior, and in retrospect, looking at the whys and hows of his life. We try to use whatever terms and labels seem useful and pertinent, holding in mind and telling him how those labels have and can change over time. We also have always talked about the various evaluations and therapies we’ve pursued, and about how they’re all designed to help us figure out what we can do to help him learn and be strong and capable.
    We don’t use any of that to say, “hey, you’re anxious, so you don’t have to behave kindly to others,” but instead use it to say, “this is why your heart is racing and you’re having a hard time and this is what we can do to make you feel more comfy and then it will be easier for you to be kind to others.”
    We also try to talk about how those “labels” are not sufficient to explain a whole person, that drs are still learning, that every kid/person with this label is not exactly the same, and that his thoughts and feelings about the conditions he deals with may not always be simple and clear-cut and may change over time, too.
    We talk too about his about his strengths and changes in him, about the ways in which the same reflective thinking that leads him to anxiety-provoking questions about how the world works today helps to make him smart as he is driven to ask questions, and will eventually be less anxiety-causing as he gets older and more mature and more able to understand the answers to some of his questions.
    As to references that help, Perri Klass and Eileen Costello coauthored a great book on “Quirky Kids”, which we’ve found helpful.

  14. I apologize in advance for the length of this. I did actually edit it down. :|We don’t have a quick-reference label for the tot’s issues, and maybe that’s where we luck out. What diagnoses we have right now are: oral-motor deficiency, motor planning delay, hypersensitivities to tactile, taste, and texture. (She’s been tested for but has not been diagnosed with Sensory Integration Dysfunction.) That’s such a mouthful, that I rarely offer any of it up to strangers except in response to specific questions, and I only offer up the piece that is relevant at that moment. I also tend to treat the instances like something in progress. Similarly, instead of saying that a child is shy, I might say “Oh, so-and-so is feeling shy right now.” It’s not a permanent condition. Well, much of it is, but where the tot is in her development and coping strategies is not permanent – everyone changes and progresses over time, so why assume the tot can’t/won’t? The lack of a label there frees us, I suppose.
    Where I can, I try to help her blend, because at 4, the tot does know she’s different and I want to help her maintain some self-confidence and belief that different doesn’t automatically equal bad. Yesterday we went to a birthday party. I knew the food would be pizza, cake, and ice cream. The tot will not eat or touch any of those items, though there’s sometimes a chance she’ll pick at the frosting. I did four things to handle the situation. 1. Filled her up at home with preferred foods, saving her tolerance for challenge foods (seems like it’s a finite amount) for the party. 2. Told her about the food and what would happen. “D’s party is going to have pizza. When we sit down to eat, I’m going to put a piece on your plate, but you don’t have to eat it or touch it unless you feel ready. If you don’t want any, you can say ‘No, thank you,’ and be done. No problem.” 3. Encouraged a lot of sensory play before the party to help her get regulated and feel calm. 4. Fed her in the car on the way home with preferred foods I had packed. But, I did not offer those foods at the party because she needs to learn to cope in public eating situations and it would only have called attention to her difference.
    And this is what I do pretty much always. Approach the situation, model and teach problem solving methods that any kid might use (like saying “no, thank you”), and try to meet her needs quietly when I can to avoid having to talk about it in front of her unless I need to. It’s not that I don’t ever talk about it, but she doesn’t need to hear it every time we go somewhere. She needs to be able to go to a party and just be a kid. Of course, she does need to know about it because she does hear me talk about it and she is in (play-based) occupational therapy, which we talk about in ways that emphasize what we get out of it. “We learn new games with Ms. K.” “We get to play on the super-cool swings there and it helps us feel happy.” “We work on the things that are tough for us – for you, it’s certain foods; for me, it’s building a diet that will be healthy for you so you can grow.”
    The idea of diversity sits well with me, even from a point of view outside of race and ethnicity. Recently my mother fell and broke her hip. She is nearly recovered now, and along the way, she’s transitioned through a wheelchair, a walker, a four-pronged cane, and a regular cane. We didn’t hide any of it from the tot and we treated it like a fact of life. “Grandma’s leg got hurt and it takes a long time to heal. For right now, her legs don’t work like yours and mine do, so she’s using a [today’s-apparatus].” We also talk about Grandma’s physical therapy in simple terms – it’s exercises she does with a specially trained person to help her legs get stronger. Through this, the tot has seen that we all have a little something going on AND we’re all working on it, one way or another.
    I like the idea of working toward seeing others not as the label that immediately appears to us but perhaps as a person in context. I hope others will see the tot that way. She is more than a kid who won’t eat or who won’t touch wet things. She’s a kid who’s working to learn how to eat and it’s a more challenging journey for her. She’ll get there, but not on anyone else’s time frame, and that’s okay with me.

  15. I’m a type 1 diabetic and my daughter is a dwarf. (I know, my story sounds improbable to me too. The type 1 diabetic single mom with a daughter who has an undiagnosable form of dwarfism and who never throws temper tantrums–I keep expecting someone to call me a liar. Anyway.)Speaking for myself, the diabetes is out there. I am on an insulin pump which makes a noticeable bulge in my pocket and has medical tubing that is constantly flapping around my waistband. I pull out pins and put holes in myself before eating–it’s kind of hard to hide it. WHat I’ve noticed is that the more casually I treat it, the more casually other people treat it. Being honest and forthright about it and treating it as “no big deal” will probably help both your son and the people he comes in contact with.
    You have no idea how often I’ve wished for a ‘label’ for my daughter’s growth issues for just this reason. “Why is she short? She has x. It means yz. Want a cookie?” As it is I feel like whenever people express an interest I end up dragging out her entire medical history–which is a pain. As much as possible, though, I try to treat it as No Big Deal. Not because it never makes a big deal (can’t say how old she’ll be when she’s finally big enough to ride a bike, for instance; and she hates it when people assume she’s a baby or tell her she’s small) but because when things are made into secrets they not only tend to grow but aquire a power to shame people. Which is the opposite of what I want.

  16. I will immediately qualify my comments with: I have no experience with autism whatsoever. I do have a 3 year old daughter who falls in the ‘highly sensitive’ category. She reacts to sensation, sound, light, commotion a little sooner and little more than many other children her age. Among other things, this puts her in situations at times where she sees other children enjoying some activity that she would like to do, but her sensitivities make the experience not so enjoyable. We talk about how x body part works and how hers is attuned and how others are attuned differently. I try to move the conversation so the variance in people is normalized, point out the good and bad in her highly attuned system and in those in the middle and those at the less attuned (or even non-functioning) end of the continuum, allow space for her to express her feelings about how her body works, when appropriate point out others who share her sensitivity to x, and help her find ways to work with her body so that she can balance respecting the reaction while not overly limiting her world. I don’t usually use the word ‘sensitivity’ with her because I think that can be misunderstood in the negative; however I realize that I am not dealing with a medical or other diagnosed condition which would be a different circumstance.As for other people… I think someone who asks a question like “Is your other other son OK?” – in front of your children especially – should get answers like “Both my sons are great. Thanks for asking!” or “Well, Johnny has had a cold all week.” Or ” The whole family came down with the flu, can you believe it?” And if the speaker persists with “no, I meant is he autistic” my response would be “Well, that’s a different question entirely.” and change the topic or walk away.

  17. @Andrea, “when things are made into secrets they not only tend to grow but aquire a power to shame people.” is a lot of what I was trying to say, put very clearly.I’m anti secret on all this. There’s no big scary bad hidden aspect to it, so it just can’t stay big bad and scary very well.

  18. @amy, couldn’t find contact info on your blog – ping me if your daughter or anyone in the close family has hypermobility (‘double-jointed’), as your three items are on the list of things that are typical or common with the underlying condition my kids have.

  19. I’m not a parent of a special needs child but I am a teacher so I work with a lot of special needs kids. The incident that made me the saddest was a student in my practicum class who we suspected had severe ADHD but had not been diagnosed (Mom hadn’t taken him to the doctor for the official diagnosis which would help us to get him an aid — it was so frustrating). One day I was helping him as he struggled with spelling and he said “You know, the reason I can’t do this is because I have ADHD.” My heart sank. It’s one thing to know, it’s another thing to use a diagnosis (or just a suspicion) as an excuse not to work and do your best. Which is exactly what he did for at least the rest of that day. I worked really hard to get him to focus on what he could do and encourage him and for a time that line stopped.I’m all about sharing information, but I’d say try to make sure that how you share helps empower the child rather than makes excuses for the child. That might be a tricky line to navigate at times but you’re a thoughtful parent who’s already thinking about all these issues. Your son is lucky to have you!

  20. my 20m old son was a micropreemie, born at 25 3/7 weeks. he had lots of medical issues he’s successfully overcoming – an ostomy from perforated bowel taken down in march, oxygen therapy until may, still can’t walk but getting pt and making progress, on lots of meds that hopefully will start decreasing in september, and just starting to touch normal growth curves. i’m fiercely proud of him.so my perspective here is from physical rather than behavioral ‘differences’, and admittedly ones that won’t likely have a huge impact on him past a certain timeframe.
    and my problem isn’t him, it’s me. i’m still so bitter – i’ll never experience normal pregnancy, never have a vaginal birth, never nurse a term baby…did i mention i’m a midwife? that all that stuff was very *very* important to me? that i’m ANGRY whenever i hear a pregnant woman make the most innocent of complaints? that i don’t think i’ll be able to work in a field i loved for years ever again?
    so, not meaning to hijack, but i want to ask others how they themselves successfully dealt with integrating their child’s diagnosis against dreams & expectations.

  21. @marci, my heart aches for you. It’s a real loss, the loss of those dreams.Not from my own experience, but my mom’s – my mom’s eldest child was born with hydrocephaly, back when they had no idea what to do with that. He died when he was 3. What she’s said to me is that every child has a birthright to be whole and healthy. That’s their birthright, and it makes us angry with everything we’ve got when they do not get it. But reality is reality, as well – many kids do not get that. On the flip side of the ‘birth’-right is that there’s that interior birthright of being able to have a normal birth experience as a mom. Not speaking universal or legal rights, just the heart ones, the emotional core.
    I suspect you already know what I’m about to say, but are just asking for it not to have to be you that says it to you this time, again.
    My mom integrated it by allowing herself to be angry about it. By grieving, raging, and being hurt. And by allowing and dealing with the everyday blessings her son brought, the patience he taught, the things she learned harder but better because of the experience. Integrating it isn’t about losing either end of the experience, or of ceasing to be angry or hurt, and somehow trading the pain for joy, it is about standing in the middle, and touching both ends at once. It’s like being in the middle of the seesaw, not on either end. If you’re on one end, a sudden move on the other and you’re way up in the sky, or crashing hard to the ground. In the middle, you don’t fly so high, or crash, but you move. It’s gentle movement, there, not wild. It’s shift and balance and attune. You’re still able to feel the end of the movement, but that’s not where you live.
    I know a lot of midwives, and love midwifery with a passion (having *NOT* succeeded at having any of my kids born in a birth center … natural, yes for two pregnancies, but birth center, my way, no.). Most of the midwives I know find a way to move into the middle. It’s from there that they can tip the balance for their clients, with just a touch, keeping people from being jarred by too fast a swing up, or too hard a crash down. It’s from there that they can work professionally, and enjoy the work.
    It takes time to integrate it, though. Time, time, and more time. Practice being angry, and feeling okay being angry, and not resenting the anger feeling like it interferes with the plans-that-were. Practice being acceptant, being willing to be open to what comes, being willing to have your child pry your fingers off your dreams and hand you new dreams to hold, more gently. Integrating that all is like swallowing the world. Take it in small bites.
    Just remember that you will always be entitled to be angry, and to weep. After 50+ years, my mother still feels fury at what was denied, and weeps at what was lost. But she also laughs and rejoices at what was gained. Both ends, and there she is, balanced, in the middle.
    It will integrate, I promise.

  22. Marci, I’ve got nothing helpful to say, but my heart goes out to you.I don’t have a special-needs child, but I love the idea of teaching all children that they are loved just the way they are, and that their special need is part of their own, much-loved identity. Obviously that’s not a panacea for the very significant challenges many children face. But still.
    For my own daughter, I found a book I really liked — “Someone Special, Just Like You,” which is an excellent introduction for preschoolers to special-needs children, and has basically that theme — some kids don’t think/walk/look/hear/see just the same way you do, and they are special people just like you are, and you have lots of common ground.

  23. @marci,my daughter was a preemie too, though not as early and not nearly as sick. my heart goes out to you and your son because it cannot be easy to have to be strong like you have been for so long. as for me, i still feel cheated out of the pregnancy experience, and i also often feel cheated out of the parenting experience, just as it seems my daughter is cheated out of the childhood experience.
    for instance, my daughter just turned 4 in june, and she has yet to taste her own birthday cake. at her 3rd birthday party, one of my cousin’s children made a big public noise to stop everyone from starting their cake and ice cream because the birthday girl should get to start first. it was sweet and chivalrous, to be sure, but sad to be in that spot to have to say in front of everyone, “It’s okay H. People can start eating. [My daughter] will start when she’s ready.” i want so many typical things for my child and she’s missing many of them, and it IS sad. i often feel sad over these things, but i try not to let it out in front of her because i don’t want to compound her own frustration with mine. some days are, of course, easier than others.
    i am trying to take a lesson from a mom of a child at my daughter’s day care. he has many developmental delays and he is probably on the autism spectrum. his mom is still in denial. she only seems to see what he can’t do or what he does differently than the other kids his age, and from the outside it appears she is missing out on getting to know this little boy for who he is, not for the list of ways he’s not measuring up to “the typical.”
    who knows? maybe i seem that way too, but i try to remember every time i find myself fixating on the hard stuff that my daughter is who she is and i love her, no matter what. i find myself applying part of my teaching philosophy to my parenting work: meet her where she is and go from there.

  24. My daughter also has a type of dwarfism, so yes on the “special needs” issue, although very different from ASD.She’s 4, and we’ve been totally honest about it from the start. Early on someone mentioned that she’s going to learn it by listening to us explain it to others, so get it clear in your head what you want her to learn right away.
    But in her case there’s no hiding it, unlike ASD. Not being honest and open about it, with her and those around her, would do her a terrible and obvious disservice, as it’s crucial that people understand that she’s older than she looks.
    The realization of the difference is slow. Like Katie I felt strongly that this not be something we sit her down and spell out as a big announcement. It has just gotten slowly and calmly worked into conversations and into her consciousness, and now she’s pretty much got it. Although some days not so much.
    At this age the label “dwarf”, and the name on her condition are pretty useless. We just deal every day with separating age and size, in her mind and in the minds of her peers. They all just started to really figure it out, and the questions started coming fast. We just answer in as simple and judgment-free manner as possible. “She’s small. If she’s 4, why is she small?” gets answered with “Yes, she’s small. People can be small or big, just like they can have blond hair or brown hair.” And as one of her classmates put it just this morning, “you can be a small 4 or a big 4!” Well, yes.
    What’s been interesting for us is to realize that when her peers ask about it, it is completely without judgment. They’re all figuring out gender differences and race differences, they ask about her size the same way that she quizzes me about her best friend’s skin color. No judgment, just questions. They’re fascinated by her size, but they treat her completely as a peer.
    And it certainly helps matters that we live in San Francisco, where difference is a way of life.

  25. @hedra,My older son has “loose ligaments” (which the neurologist said could lead to/connect to double-jointedness or hyperextension), poor muscle tone, hypersensitive to much audio and tactile stimulation BUT also under-sensitive to others (needs to wear tight clothes all the time, wants deep pressure touch), fine and gross motor delays, speech delay, midline issues, environmental allergies, oral fixation (always chewing on his clothes and his fingers)….
    He’s been variously diagnosed with a regulatory disorder, sensory integration dysfunction, generalized anxiety, gross and fine motor delays, speech (articulation and pragmatics) delays.. no one seems to have a clue on how to “explain” him overall…
    any ideas what else we might usefully be checking out?

  26. Look up either Joint Hypermobility Disorder, Ehlers Danlos Syndrome Hypermobility type, or Inherited Collagen Disorders.They’re a cluster of genetic collagen-formation disorders. Depending on which form of collagen and how severe or where the issue is within the collagen, it can affect all sorts of things. I think the Wikipedia list is pretty extensive, but misses most of the neurological/motor issues. And there’s very little yet on the ‘germ cell line’ issue, where it affects the tissues of one germ cell line more than the others (like mainly neurological, or mainly oral-GI, etc.). But there is periodically deep in the research comment that for some reason it varies in expression (that is, there’s a cycle of better/worse as collagen breaks down and is repaired), it varies by weather (symptoms are worse in cold weather), etc.
    Common neurological components are suspected to be due to the fact that collagen is used to form the myelin sheath around nerves, and that poor collagen there means ‘leaky’ nerves, which means data does not travel smoothly to/from the brain. Leading to motor issues, dexterity issues, gut motility disorders (reflux, IBS, constipation, worse-than-typical Fructose Malabsorption in our case), etc. Add in lax muscle tone, poor proprioception of joints, tendency to anxiety and depression, etc., and you end up with a cluster- … um, cluster of issues around sensory processing and dexterity that can cause a lot of distress. Then add in that unless you KNOW that this is playing a role, the OT/PT may be not addressing the need for focus on joint stability and strength exercises as a primary path to function…
    Um, anyway. In the UK, I think there’s a clinic at Leeds that deals with hypermobility. In the US, both Cincinnati and Philadelphia (CHOP) have clinics, not sure about elsewhere.

  27. Ohmy
    god.
    “Leading to motor issues, dexterity issues, gut motility disorders (reflux, IBS, constipation, worse-than-typical Fructose Malabsorption in our case), etc. Add in lax muscle tone, poor proprioception of joints, tendency to anxiety and depression, etc., and you end up with a cluster- … um, cluster of issues around sensory processing and dexterity that can cause a lot of distress.”
    In addition to my older son’s sensory/motor/anxiety issues, my younger son has severe reflux and multiple food intolerances, ongoing diarrhea (except under very restricted diet)… okay, well, back we go to our pediatrician.
    Hedra, thank you so much… and Moxie, thank you for making this such an amazing place to learn.

  28. We live in Connecticut and Yale has a great child study clinic; there are also good places to go in St Louis, Mo, and Cleveland for a lot of the sensory/spectrum issues mentioned in the comments.

  29. Ohmy
    god.
    “Leading to motor issues, dexterity issues, gut motility disorders (reflux, IBS, constipation, worse-than-typical Fructose Malabsorption in our case), etc. Add in lax muscle tone, poor proprioception of joints, tendency to anxiety and depression, etc., and you end up with a cluster- … um, cluster of issues around sensory processing and dexterity that can cause a lot of distress.”
    In addition to my older son’s sensory/motor/anxiety issues, my younger son has severe reflux and multiple food allergies and intolerances, ongoing diarrhea (except under very restricted diet), and asthma; I have asthma and colitis,… okay, well, back we go to our pediatrician.
    Hedra, thank you so much… and Moxie, thank you for making this such an amazing place to learn.

  30. I really don’t have much to say today, shocking! All that I was including in my post has already been said here by these amazing women.To those parents still questioning whether or not to mention a child’s special needs to him or her, please remember one thing. Special needs or not a child still has a psyche and feelings about how he or she is viewed by others. Self esteem can be affected by statements or lack of statements that are made.
    One other point. There are a few comments about a parent’s need to say something about why their child isn’t…playing with others, eating what others are eating, or fill in the blank. I ran into this with Tall, nothing like what any of you are facing and that’s where I came up with this one.
    I got so tired of explaining, and it seemed the more I explained the more Tall would use my words as an excuse not to be as capable as I knew he could be. So you don’t have to repeat the entire reason why your child isn’t doing what the others are doing, try responding with a totally normal statement that applies to any situation-special needs or not, try saying, “thanks for pointing that out, we’re having a moment right now and will join you soon.”
    I’m humbled by your stories and the way you are empowering your children to handle themselves and those around them.

  31. Thank you, everyone, for your comments. When I clicked to Moxie’s page today and saw my question, tears immediately came to my eyes because I knew I would get such wonderful wisdom from all of you.Hedra, so much of what you wrote resonates with me, especially explaining to my child that “some people’s brains work one way, some people’s brains work another way, and both have their strengths and weaknesses. Yours works in the way people call autism spectrum, which means you’ve got a lot of strengths in one area, and had to have support to learn the skills in the other area. You learned the other skills really well, but it may sometimes take extra effort for you – but effort is just effort, and you’ve succeeded.” Our son has SO many strengths that I want to focus on with him. Much of what is involved in being an advocate for my son is focused on his shortcomings and how he needs help, but I need to remember his many strengths.
    I loved Andrea’s “…when things are made into secrets they not only tend to grow but aquire a power to shame people.” Yes, yes, and yes! I don’t want our son ever to think there is something “wrong” with him, that we are ashamed of him, or that he should be ashamed of himself.
    Thank you all.

  32. @cat19, you can email me from the contact on my blog and I’ll send you toward some of the resources I know of, which might help your pediatrician grasp what you’re talking about.

  33. I don’t know whether anyone else has suggested this yet or not (sorry – don’t have time right now to go through the comments), but you know what would be even better than getting advice from parents of kids with autism? Getting advice from adults with autism. On all sorts of things, not just this. After all, they’ve been there, done that, and can let you know the real inside view.I read a newsgroup called alt.support.autism where there are a lot of autistic people posting, as well as a lot of parents of autistic children. It’s been fascinating in terms of getting different viewpoints. Unfortunately I’ve no idea how to explain to someone else how to go about accessing newsgroups if you don’t know – you can download them the way you download e-mail, but I’m not up enough on the technicalities to be able to explain it to anyone else. (You can read the group from http://groups.google.com/groups/alt.support.autism, but trying to read it that way on any sort of regular basis is hopelessly difficult.)

  34. Oh, one other thing to add, which is something I’ve learned both from that group and others:DEFINITELY DO NOT “phase out the word ‘autism’ as his symptoms show up less and less”. He may get better at hiding his symptoms, but he will always be autistic. Over and over again, I read posts from autistic people saying that one of the worst things for them is that, because people see being ‘normal’ as the desirable outcome for them, they end up being expected to hide their differences as much as possible and pretend they’re getting along just fine, while constantly living with the strain of trying to be someone they’re not. Regardless of how well he learns to deal with his autism, he’ll still need to acknowledge that his brain does work differently, that a lot of day-to-day things that are easy for others are going to be hard for him, and that the fact that he’s different in some ways is OK, not something he has to keep more and more carefully hidden as he goes along.

  35. Yet again I am amazed at the overwhelming wisdom and candor that Moxie’s posts elicit. Thank you for reminding me that there is far more to parenting than what pre-school my kids get into and how much sleep we’re(not) getting.

  36. i have a daughter with sensory integration issues, and because she’s still so young (under 2) i haven’t yet had to explain her differences/strengths/challenges to her. i also don’t know yet where she’ll land in the whole scheme of things – i.e., how much this will afffect her long-term. that said, as her mom, i am her advocate. to me, that means it is my job to support her in being her best and happiest self, and concurrently support her in her roughest and most confusing times. i feel like hiding anything from her could/will give her a sense that i feel ahamed, or that i wish she were different. that doesn’t mean it’s our focal point every day, and it certainly doesn’t mean that’s how i introduce her (literally and figuratively) to others. it means i try to give her the tools to file down the rough spots on her own, and am there when things are just too pokey for her to navigate independently. i soooo believe that children deserve to feel respected and empowered, and i believe one of the tools we give our kids to achieve those goals is telling them the truth.i also strongly recommend talking to other parents of asd kids. there is a fantastic bunch of moms over at the discussion site at “mothering” magazine. they’re bright, passionate, honest, and love their kids fiercely. there are lots of different opinions re: the struggles you’re facing (whether asd is curable, treatable, etc.), but i think these men and women can offer up the most authentic feedback possible. they walk in your shoes every day…
    last thing (i promise). remember that your child may have a family of their own one day, and if their child was also on the spectrum, it’d be so helpful if your child wasn’t just hearing of his/her own diagnosis. see, i think my daughter’s dad is probably on the spectrum, but he’s never been diagnosed, and all his quirks have always been attributed to dyslexia. now here i have this daughter who already seems to share some of his quirks, but he’s unwilling to see it at all. i think if his parents would have been more vigilant and honest with themselves (and him), he’d now be in a healthier place to parent his own daughter.

  37. @SarahV – You’re right–I think our son will always have autism. However, I don’t know how much of a daily impact it will end up having on him. The various interventions we’re trying are really helping him so much… not “fixing” him, but helping him be the best him he can be.@greatkid – I agree wholeheartedly re: thinking about my son’s hypothetical future family. The more comfortable he is in his own skin, the more open and aware he will be to/of his own children’s diverse traits.
    I am part of several wonderful communities of parents. Most of us, however, have children around the same age, and so we haven’t dealt with the telling-our-children issue quite yet. This is why I value all of your input so much.

  38. Tangentially, Moxie, I’d love to hear your thoughts on the special responsibilities of raising white men in America!

  39. I’m an adult with asperger’s, and because I’ve always been able to “pass” as “normal”, I’ve only recently found out. And it’s been huge. Not because it’s told me anything new about me — frankly, it’s pretty clear that the diagnostic criteria for all of the autism-spectrum ‘disorders’ were put together by people who only know what certain inconvenient (for them) coping-mechanisms look like from the outside (but that’s a whole other essay) — but because of what it’s told me about other people. Part of the diagnostic criteria for autism/asperger’s/etc is being bad at empathy, right? Which somehow implies that neurotypicals are *good* at it. Here’s the big secret that no-one seems to be telling neurotypicals, let alone us disordered-types: You’re not. At all. Not even slightly. Most “normal” people are just very facile projectors — which is functionally close enough to empathy, if you’re dealing with someone else wire up the same way you are (which is how it goes most of the time, hence the delusions), but is useless and even destructively misleading when one encounters someone wired up otherwise. Relevance? Knowing that it’s pointless to attempt to deduce the motives, needs, and likely actions of others based on projection saves me and everyone else a lot of confusion. It allows me to gather better data, and the interaction is smoother and more pleasant for all parties as a consequence. It also allows me to recognise that other people are projecting, and that their projections are probably inaccurate, and that’s made it much less of a struggle to actually recognise and articulate my own emotional states. Difficulty with that is also part of the diagnostic criteria, but I don’t believe it’s inevitable, I believe it’s a fairly predictable consequence of spending your entire life being told you’re not feeling what you are feeling and that you are feeling what you’re not, all by people who believe themselves to be (and are presented as) authorities but who are actually just grossly overestimating their own capacity to read other people’s emotional states (as distinct from projecting their own). Sorry — that was long and tangly, but I hope the sense of it’s in there.The best metaphor I’ve encountered is this: most people’s brains are running on Windows. They come with the data-filtering preferences pre-set out of the box, and most Windows users aren’t even really aware that there *are* preferences. Those of us on the autism-spectrum are mostly running Linux (some of us aren’t even doing that, we’re just coding everything on the fly) and yes, it takes a bit more fiddling around to set it up, and yes, if you get too far below the surface anything you say will just baffle the Windows-types, but once you do get the system configured right, the greater flexibility and range of data that it makes available opens up all kinds of possibilities that Windows can’t even register as existent. Linux is not a bad system to be running; in fact, in many ways it’s superior. But if you instal Linux, and then hand the user a manual for Windows and the number for the Microsoft help-line and just leave them to it, how on earth are they ever going to learn to use what they actually do have?
    The thing that makes autism and asperger’s what they are isn’t the behavioural coping mechanisms and poor person-to-culture-fit artefacts that are covered by the diagnostic criteria, it’s a simple filtering difference. Everyone filters out most of the complexity of the world that our senses feed to us. We shrink the world so that it’ll fit into our little primate brains. We need to, or it’s all just… too much. Those of us with autism and asperger’s just filter a little (sometimes a lot) less. Our world is a bit more data-rich than what this culture considers “normal”, and that can be confusing and overwhelming to an adult sometimes, so needless to say it’s a bit brain-bending for kids! It’s something that a person needs to learn to manage, not be taught to deny. Not telling your son isn’t going to protect him from knowing he’s different — most of us diagnosed as adults have always felt ‘alien’ without knowing why — it’ll just teach him that you think different is somehow bad. There’s nothing wrong with your son, he just needs things that this culture doesn’t provide as the default. Keep that from him, and you’re sending a clear message, and probably not the one you intend. The question isn’t “if” you should tell him, it’s “how”.

  40. My oldest had a fairly serious speech delay. Thanks to EI and lots of work at home and a good integrated preschool — he passes for “normal” these days (he’s almost 9). He had a little bit of a hard time learning to read, because he didn’t consistently make the right sounds for letters, and he still has a hard time repeating a multi-syllabic new words correctly. But, since he’s a fall baby, he was right on the “old” end of his class, and it wasn’t a problem — he was reading fluently just in time for 2nd grade.After 7+ years of being hyper-aware of his speech, I correct his pronunciation, sometimes without even thinking about it. Lately, this has really started to irritate him, and I mostly back off — mostly. It’s also been an opportunity to talk about “differences.” We talk about how he’s really good at math, and soccer, and climbing things. I ask if he knows anyone who has a hard time with math (or soccer, or climbing things). (Of course, the answer is yes.) Well, everyone has stuff that comes easily to them, and other stuff that takes a little more work. For him — he’s always been a monkey and grokked math intuitively. The talking bit? A little more work. Then I slip back into Mom-mode and explain that (like it or not) it’s my job to help him with the things that are hard — and we’ve worked out some agreements about when and where it’s acceptable for me to correct his pronunciation.

  41. @Ruth, I have found that both the Parent Effectiveness Training and Non-violent Communication methods speak to exactly what you’re talking about regarding empathy vs projection. Kids are actually pretty good with the basics of empathy, but we TEACH them NOT to be, and to instead project project project! ARGH!Learning how to listen, actively and without injecting my own issues, needs, opionins, logic, understanding (including expectations of long and short-term consequences of actions), emotions, ideology, theory, and knee-jerk-things-my-parents-took-out-on-me has been HARD HARD work. It’s also humbling to see how often what I think is true for another is so seriously NOT true. And I’ve also always come from a perspective of ‘mind reading others is un-helpful’! EVEN with that perspective, I still end up putting my own energy into their space and have to pull back and start over.
    For example, this morning. B was having huge fits, growling and screaming and pulling on me trying to make me do something he chose instead of getting ready to go to work. I interpreted freely, analyzing all over the place – has he eaten something that’s setting him off, has he had enough sleep, is he frustrated about a lack of control in his life, is he trying to make me fix something I messed up because he’s afraid it will be blamed on him, etc., etc. I finally got enough of a brain to stop THINKING and start ENGAGING. Listened. Just listened, and reflected back, active listening. Let him take me there, not me take him to where I thought he was. We ended up in ‘I’m feeling lonely and isolated and un-special, and there is no privacy and no place that is just mine in the house’ (which is all entirely true – they’re all sharing a room, by necessity, and I know from experience that there’s nothing lonelier than being dumped in with a bunch of others and having all needs averaged together. Tends to make one faceless in the crowd.) I would not have got there if I’d just stuck with ‘being empathetic’ in the usual way.
    I’d probably tweak your Windows vs Linux image a bit – I think everyone is running some version of Linux, but for neurotypical people it has been pre-tweaked to look like a final/complete version. Because we *CAN* get down into the programming, but if we don’t see a need to, we tend not to. And ya can’t really do that with Windows. Some people might try, and not understand what they are getting into, and not be able to deal with the data flow, either. (I wonder if my entire family runs just on the ‘neuro-typical’ side of the ASD line, since we’re all huge data miners with a capacity to notice/pick up/store/assess details other people don’t seem to notice. I used to do it as a party trick in college, because I could logically track back through details other people didn’t even seem to have captured at all. My grandfather had Asperger’s, and a sister does as well… things that make ya go hmmm.)
    Um, anyway, yes, I agree, what passes for empathy from most in our culture has nothing to do with empathy. But I think if given the right guide-books, we can learn how to do that same smooth, effective communication that you had to learn by necessity (just like my keypad work is highly accurate BECAUSE I’m dyslexic and had to learn to double-triple check myself before my fingers even hit the keys – sometimes what is expected to be a disability enables us to pass the mark set by the average/typical people by learning how from a different starting point).

  42. I’ve been a lurker here for awhile, but just had to post.I was born deaf. I always have been deaf and always will be. I don’t look deaf because it’s not an obvious handicap like a wheelchair or dwarfism. But when I start to speak, people know there’s something wrong. I speak very well for a deaf person but I still don’t speak normally.
    I grew up with the mentality that I could do everything everyone else does and that nothing should stop me from doing what I want to do. There’s a quote that says “Deaf people can do anything but hear.” I find that to be so true. The child will KNOW there’s something wrong with him or her so don’t keep it a secret. Keep it as normal as possible. There are times the child will say “I want to be normal like everyone else” and that’s heartbreaking I’m sure to a parent but that child will feel that way at times all throughout their life. I know I still do and I’m in my late 20’s.
    That’s my 2 cents.

  43. I have a 7 year old on the Autism Spectrum. One thing to remember.. child first, autism second. Don’t ever talk about Autism negatively or be ‘hush hush’ about it. I’d be upfront about it but keep it on his level. My son recently went to camp and there was an article in the paper about his camp (which services ADHD/Autism/Aspergers kids). The camp leader wanted to share the article with the kids (it had some great pictures) but before doing so she went through and crossed out any time it said Autism – when I asked her why, she said some of the kids dont know “they have autism” like it was something dreadful. My son overheard the conversation between the two of us and said to me “Not that Autism, Mommy – Just very special”. You know.. he is right 🙂

  44. @Hedra — the way you talk about parenting is the way I wish I’d been parented, and what I aspire to. I have no idea if they’re philosophies and techniques that’d work for/with neurotypical kids (although I see no reason why they wouldn’t), but they feel like a perfect fit for spectrum-type cognitive-styles. So I guess my 2 cents for question-asking-Katie really just boils down to “do whatever Hedra recommends”!About the Windows/Linux metaphor… I use it because I’ve found it’s the one that makes the most sense to neurotypicals. It’s function is to translate the information into a shape they can understand, after all, and that’s the one that seems to resonate. Even Windows allows the user to alter the settings, after all — everyone does have the ability/possibility to manually adjust the preferences, but neurotypicals really do seem to be genuinely unable to dig into the coding. I think “passing”-aspies/stealth-spectrum-types grossly overestimate the self-awareness of neurotypicals. We project. They *think* they’re self-aware, but then they also think they’re good at empathy and social interaction, and if you watch people closely and objectively you notice that mostly they’re just kind of terrible at noticing when they’re getting it ‘wrong’. We are running a different OS. More of our processing-stuff is closer to the surface. We’re more consciously aware of more of the information that’s delivered to us by our senses, and we’re more consciously aware of the information delivered to us by our psyches. That doesn’t make us “better”, but it also doesn’t make us “broken”. Just different. It makes everything a lot more mental-labour intensive, and it can make our lives much harder, but it also makes things possible. There’s a qualitative difference as well as a quantitative one, and while we can (and ideally do) end up in a similar place as humans, the path getting there crosses vastly different terrain. Not better or worse, just different. We just — all of us — need to learn how to see the value of qualities we don’t posses ourselves, rather than working so hard to ‘value’ difference by twisting it around until we can pretend it’s just an alternate manifestation of sameness.
    Look at it this way: humans have been so successful because we’re adaptable. Not just at the person-by-person scale, but at a group scale too. We’re a social species, so genetic selection works at a population level, not just an individual one. A group that contains only robust and impulsive novelty and stimulus seeking individuals (the dominant cognitive style of this culture, to the point that it’s assumed to be the only ‘normal’) would probably be successful for short periods under good conditions, but would hardly be sustainable. It’s a style that has aggressive and expansionist advantages, but it has weakness, too: at its worst it can be recklessly short-sighted, physically numbed, and emotionally sociopathic. Those weaknesses are balanced out well by the inclusion of individuals who are less robust, but who are highly sensitive to nuance, to changes in the environment, who are pattern-finders, who look for and create order and stability. If something’s slightly toxic, we’ll get sick long before everybody dies. If something (like, say, food or water) is hard to find, we’ll probably be the ones to notice and connect the little trivial things that taken together become a significant useful pattern. We’ll warn of consequences and plan for contingencies. Obviously, in isolation we’d be rubbish, too — we’d be wiped out by the first attack, and left alone we’d stagnate fast in a swamp of our own obsessive rigidity — but that’s kind of the point: none of us *are* in isolation. Human social groups tend to produce a wide range of ways of being human, all of which have advantages and weaknesses, and all of which put together become something greater than the sum of its parts.
    It’s clear, I guess, that I honestly don’t believe asperger’s or even autism is necessarily a pathology, or something ‘wrong’. I think they end up looking that way in-this-culture-at-this-time because this culture has an unusually narrow range of ‘normal’ and is quite impatient and even hostile (overtly and covertly) to people who don’t fit within its parameters. This culture has also built itself an artificial environment that’s extremely high-stimulus — louder! faster! brighter! extra-tasty! — to say nothing of the information-overload that’s gotten pronounced enough to slip into cliché even for ‘neurotypicals’. This is all pretty much guaranteed to overload the psyche and nervous system of anyone who’s not a “robust and impulsive novelty and stimulus seeking” type, and I don’t think it’s a coincidence that fewer and fewer “sensitive pattern-finders” are managing to “pass” under these conditions. I also don’t think it’s a coincidence that many of the diagnostic criteria for autism and asperger’s are the same behaviours that in a ‘normal’ child would be considered red-flags for abuse (something which I’ve heard causes problems sometimes for the parents of spectrum kids when they run afoul of ostensibly well-meaning busybodies). Basically, people show up as “disordered” and get diagnosed because the culture is knocking them around. The diagnostic criteria doesn’t address the actual primary underlying difference in sensitivity and cognitive style (they’re not even really mentioned!), or even secondary manifestations or symptoms of a difference (high sensitivity to tactile and interactional nuance –> acute awareness of getting it ‘wrong’ gesturally and/or interactionally –> paralysing self-doubt and/or over-correcting = plausible sequence that would account for many social and motor difficulties, for example. Yet social and motor difficulties are usually discussed as if they’re primary); it just covers one possible sub-set of coping mechanisms that’s inconvenient to (certain kinds of) others. So officially-diagnosed autism and asperger’s becomes synonymous with *broken* autism and asperger’s. Those of us who can “pass” tend to do so — and yes, I do mean “pass” to carry the same loading that it would if we were talking about race or sexuality — so the ways in which this way of being is functional or even advantageous tend to go overlooked.
    Sorry — essay again!
    Short version: not better or worse, just different. And ‘different’ has really and meaningful advantages that can be a trade-off for the challenges, if we let them.

  45. Hmm. I think I’ll accept your Windows analogy, then, since I’m probably in some way ‘passing’ around the edges, at least.And your population stability thing rings true to me, too. People have noted that the number of diagnosed cases of autism has risen a lot lately, and they in part point to the successful ‘reproductive’ strategy of geekdom – that is, successful individuals tend to reproduce, so the technology-oriented individuals (often on-spectrum or pretty near) are increasingly reproductively successful. But I think people don’t look back far enough for the pattern. The Depression is what I’m thinking. Because it was very clear that my grandfather was not socially-normal by anyone’s measure. He was narrow-focus, obsessed, orderly, and immune to social process beyone the most simple. Yet he married, not once, but twice (the first wife died young). Why? Because he was employed. He was employable because he wanted to learn his job, learn it well and completely, and then just DO it. He didn’t want or need anything beyond that, he didn’t care as much about pay or conditions or anything else that neuro-typical people cared about, he wasn’t worried about family issues (though there were many, he just didn’t register them – and he was the cause of rather a few, too), etc. He was a perfect employee. Worked his entire life for one company, doing basically one job, and at his retirement ‘party’ the only person who showed up was his immediate supervisor (who was required to attend). He had no friends. He didn’t seem to be bothered by this (though my grandmother was horrified). He was a pattern-seeker and pattern-repeater, which made him highly useful in ‘difficult times’. He was employed, and therefore he was ‘a catch’. He did not pursue women, but they pursued him. He didn’t object to being married, so he got married. And had kids. And I wonder how many other people in the depression became ‘reproductively successful’ because they were employable, and were employable because they were on the spectrum. The seeming exponential increase in diagnosis feels to me to have had to start ‘somewhere’ (and not just because of better diagnosis, I suspect).
    Anyway, that’s just a ponder. Interesting stuff. (and thanks on the parenting stuff – it’s partly a reaction to having to learn this as a family from scratch, BECAUSE my grandfather understood none of it, and so just did as he chose, and caused a lot of damage. He may have been high-functioning, but he was not good with human patterns at all.)

  46. I work in a private elementary school. A few years ago we had a child transfer in who had Asberger’s, one of the clearest cases I have seen. He was high functioning and extremely smart but he got hung up on things. And was socially awkward. But fine, really. The problem was his parents who had him secretly diagnosed but refused to allow the school to “know” the diagnosis because they didn’t want him labeled. So everyone had to just pretend all was well. Fast forward a year and the thing he was hung up on became a student, a girl in his class. He had what I guess was a crush that he didn’t know what to do with. He became violent with her when rejected. Eventually, after warnings, he was asked to leave the school because he could not control himself around her. We couldn’t address it as what it actually was because they didn’t want to label it. And that poor child had no idea why he acted the way he did and why he felt so out of control and different and weird. And it broke my heart. If they had faced the actuality and then discussed it with him and given him more strategies and maybe even allowed us as a school to discuss it with parents and kids in his class…. I don’t know. It seems like it might have turned out differently.I think all kids should discuss how they learn and think. All of us do it differently and knowing yourself in that way can ONLY be beneficial.

  47. I work in a private elementary school. A few years ago we had a child transfer in who had Asberger’s, one of the clearest cases I have seen. He was high functioning and extremely smart but he got hung up on things. And was socially awkward. But fine, really. The problem was his parents who had him secretly diagnosed but refused to allow the school to “know” the diagnosis because they didn’t want him labeled. So everyone had to just pretend all was well. Fast forward a year and the thing he was hung up on became a student, a girl in his class. He had what I guess was a crush that he didn’t know what to do with. He became violent with her when rejected. Eventually, after warnings, he was asked to leave the school because he could not control himself around her. We couldn’t address it as what it actually was because they didn’t want to label it. And that poor child had no idea why he acted the way he did and why he felt so out of control and different and weird. And it broke my heart. If they had faced the actuality and then discussed it with him and given him more strategies and maybe even allowed us as a school to discuss it with parents and kids in his class…. I don’t know. It seems like it might have turned out differently.I think all kids should discuss how they learn and think. All of us do it differently and knowing yourself in that way can ONLY be beneficial.

  48. @marci, My little boy was born with Congenital Toxoplasmosis. It was devastating to me as I had had the “perfect pregnancy” complete with doula, no morning sickness, yoga every day, organic foods and swimming in the tropical ocean almost every day, and giving birth actually on my due date. I felt exactly that same rage of how could this happen to me! especially when I see the iceheads next door just had another baby with apparently no health problems. Although my little boy is doing very well, he does have scarring on his retinas and we won’t know if that affects his close vision for a couple of years, some children with toxoplasmosis have learning disabilities and although it doesn’t seem like my buddy will I don’t think we’ll know til we get there. I have been wondering the same thing, how do we tell him? His treatment will be over at 1 year, and then we’ll have to have periodic eye checks for recurrence every 3 months. I don’t want his world to be all about his “disease” I want him to know he can do anything he wants to do, I don’t want him to feel different or less than anyone else. And I especially have agonies of the heart that people in my own family seem to only care about his health issues, not that he is wonderful and smiling and cheerful and rolled over at 3 months, and has two teeth and sleeps through the night and is charming, flirty and fantastics, and looks to be about to crawl at 5 months.Even my own sisters seem to have ignored him because they just don’t know how to deal with the fact that my baby was born with problems, and we might not know the extent of them for a while. I so hear you when you say that you are angry at everyone, even other pregnant women, I went through the same thing where I didn’t want to hear about anyone else’s baby or birth experience because mine was so traumatic. Picture a yogini who started labor out at the beach, and ended up with a c-section and the baby being transported by a special teamto the children’s hospital NICU. It was about the farthest thing from my imaginings about my baby’s entrance to the world that could have happened. Anyway – thanks for the chance to vent.

  49. My little boy was born with Congenital Toxoplasmosis. It was devastating to me as I had had the “perfect pregnancy” complete with doula, no morning sickness, yoga every day, organic foods and swimming in the tropical ocean almost every day, and giving birth actually on my due date. I felt exactly that same rage of how could this happen to me! especially when I see the iceheads next door just had another baby with apparently no health problems. Although my little boy is doing very well, he does have scarring on his retinas and we won’t know if that affects his close vision for a couple of years, some children with toxoplasmosis have learning disabilities and although it doesn’t seem like my buddy will I don’t think we’ll know til we get there. I have been wondering the same thing, how do we tell him? His treatment will be over at 1 year, and then we’ll have to have periodic eye checks for recurrence every 3 months. I don’t want his world to be all about his “disease” I want him to know he can do anything he wants to do, I don’t want him to feel different or less than anyone else. And I especially have agonies of the heart that people in my own family seem to only care about his health issues, not that he is wonderful and smiling and cheerful and rolled over at 3 months, and has two teeth and sleeps through the night and is charming, flirty and fantastics, and looks to be about to crawl at 5 months.Even my own sisters seem to have ignored him because they just don’t know how to deal with the fact that my baby was born with problems, and we might not know the extent of them for a while. I so hear you when you say that you are angry at everyone, even other pregnant women, I went through the same thing where I didn’t want to hear about anyone else’s baby or birth experience because mine was so traumatic. Picture a yogini who started labor out at the beach, and ended up with a c-section and the baby being transported by a special teamto the children’s hospital NICU. It was about the farthest thing from my imaginings about my baby’s entrance to the world that could have happened. Anyway – thanks for the chance to vent.

  50. Many good things have been said. This is such a fantastic site for advice and support.Quick word from the point of view which your younger son might share. I too was the younger of two children, whose older sibling was on the spectrum of autism – in my case, this was kept a secret even within my family. This diagnosis was revealed to me as a young adult by one of my parents.
    Everyone in the family needs to know what the problems are in the family. I for example, have trouble sorting out bad times from the past and making sense of what was nuture/choice/personal decisions which led to vs. what was the unexplained (to me) mental illness. From my own personal pain, I definitely urge you to make sure that the brothers are good to one another. It sounds like you are a thoughtful mom with great support so I am confident you are all going to be ok.
    Best of luck!

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