Friday, April 1, 2011

Top Ten Things I'm Aware of About Autism

Happy Autism Awareness Month! It's going to be a month-long fiesta of wearing ribbons and making Facebook status updates and watching special education and other support services fall prey to sweeping budget cuts. Awesome!

We're still less than a year into Little Dude's diagnosis, but I'm certainly far more aware of autism than I ever wanted to be. Here are, in fact, the Top Ten Things I'm Aware of About Autism.

10. We are incredibly fortunate that Little Dude's form of autism is a very functional Asperger Syndrome. It's kind of like when I had twins, and singleton moms would be like, "I don't know how you do it!" And all I could do was bow down to my friends with triplets and quads. I bow down to the parents who are struggling with more severe forms of autism.  Our son is verbal.  Many children with autism are not.  That pretty much sums up how lucky we are right there.

9. Autism never travels alone. It brings lots of little friends to the party: sensory processing issues, anxiety, OCD, ADHD, allergies, gastrointestinal issues. I'd also like to point out that no one knows why there are so many "comorbid disorders," or how they tie in together, or really anything at all for sure, except that the number of autism diagnoses is growing alarmingly.

8. Autism is expensive. Would Little Dude be doing better with private occupational therapy for his sensory problems? Yes. Can we afford it? No. Most of the sevices he needs have been provided through state services, but some issues, like Sensory Processing Disorder, don't qualify for services. Plus, there's always the knowledge that more therapy would be better.  There are, here and there, private school for kids with autism.  One of my good friends has just started her son in a school like that; it's wonderful.  Although now she jokes that she's performing, um, "services" in back alleys to pay for it.  And that's just one child, one family. The national and global cost of autism is astronomical.

7. It makes me incredibly uncomfortable when people post on Facebook that "people with autism aren't looking for a cure, only acceptance."  You know what?  I think that's true of some people with autism.  But I know that there are other people who feel differently.  And while I love my son exactly as he is, I hope that some day other parents won't have to go through what parents are struggling with today.  Instead of putting up a Facebook status post, contact your legislator and encourage him or her to fund autism research and education.

6. Even when you're expecting it, being told by a medical professional that your child has autism? Sucks.

5. Even so, it's not the end of the world. Life goes on after the diagnosis, and in fact life gets better. Little Dude's diagnosis helped us understand him, and the way his mind works. We are able to be better parents to him. Also, the diagnosis was the key to getting him help.

4. There is some hidden awesomeness with autism. Our son is ah-may-zing. He randomly builds Lego structures that bear a surprising resemblance to the work of Frank Lloyd Wright. His ability to focus on one topic is sometimes maddening but its power and intensity is always awe-inspiring. His inability to understand some social nuances also means that he completely cuts through a lot of the social b.s. that we think of as "normal." It's kind of like living with a small, non-swearing George Carlin.

3. There is too much we don't know.  Other families have very different experiences and histories than ours, but Little Dude has always been autistic. It is, very clearly, genetic in our case. (I mean, have you seen the diagram of my DNA?  There's a reason I call it the "Double Helix of Crap.")  But what about the kids who appear to be typically developing, only to withdraw and lose skills? 

2. Awareness and sensitivity come in the most unexpected places. A guy working at GameStop blew my mind this week with his knowledge of Asperger Syndrome and his ability to engage with Little Dude. Conversely, not everyone who should know about autism does. I have met public school teachers who blew my mind by knowing literally nothing about Asperger Syndrome.  As in, did not know of the existence of Asperger Syndrome.  Never heard of it.

1. Although the struggles are hard, the successes are that much sweeter. 

56 comments:

  1. We have been living with our son's diagnosis for a week and 2 days. It's been the longest 9 days of my life. Thanks for the lighthearted posts, they have actually really helped accept this isn't the end of the world.

    BTW - I have a very similar "Double Helix of Crap."

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    1. This is really very heart touching blog post and when i read it completely i decide to share this post with my all friends.

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  2. I could not have loved this post anymore!

    My son has PDD NOS and your blog has just been such a comfort to know that I'm not the only mom with an ah may zing child!

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  3. Love this. As I sit up with my ADD & insomnia and try to rub two brain cells together to craft my Autism Awareness Month post I noticed yours was up already (oooh, shiny) and came over to check it out. Just lovely and kick-ass, as always. Thanks!

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  4. Dead on accurate, and thanks for expressing it so well. I especially love #4: "His inability to understand some social nuances also means that he completely cuts through a lot of the social b.s. that we think of as "normal." It's kind of like living with a small, non-swearing George Carlin." Oh so very YES! He's a walking, talking BS filter, and his motto in life is probably going to be, "Cut to the chase," unless it's "Did you know that the Atari 2600 is awesome?"

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  5. I am so stealing your "double helix of crap." It's got to be genetic in our case too. There's no other way to describe 2 kids affected, born in different states, one kid didn't even live in the one state, and who have both shown signs since birth (if we and the doctors were truly looking). And the Asperger's verbality (yes I'm making up a word) has it's days too. Like my son who just won't STFU some days. Really. I can only take so much Harry Potter and Star Wars jargon.

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  6. This whole post is right on. I'm gonna share the crap out of it ;)

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  7. Completely accurate and true. Ironically enough, I wrote a post today about my 17 year olds success on this journey. Please read it to share the hope:

    It truly takes a village! http://su.pr/Aql2l8

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  8. Thanks for posting this. And I am so glad you mentioned that there is too much we don't know about autism. My son was one who was progressing up to a point --and then suddenly lost verbal skills. Would no longer smile or give eye contact. And on and on. I pray there will be a cure for autism in all its forms one day.

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  9. Love this post. My son was given a diagnosis two weeks ago. Although I expected it, it still sucks. He's very high-functioning - I'm very lucky and grateful. But it still sucks.

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  10. My son received a diagnosis at age 3 and he is now 7. My question is about OT. We went all in for the private OT right after the diagnosis, going into debt to do anything to help our son. But after a while...um...? What in the world does a private OT provide that a parent can't do at home? To me OT seems a bit woo-ish. Lots of trampolines, "fidgets," swings, jumping up and down on bubble wrap. ??? We continued for a while since it was fun for the kid and obviously not doing any harm, but I still kick myself for spending hundreds and hundreds of dollars on this stuff. Did we just happen to receive OT services that were poor? Is there something else out there I don't know about? I'll never forget the day I picked my son up from OT where he had been "working" with Stomp Rockets. I was paying $80/hr. As you know, you can get Stomp Rockets at Target for like $14.99. So what's the deal with OT for autism/sensory processing? Why do people put so much stock in it and pay so much for it?

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  11. I demand to know who the Gamestop guy is!! Interview him for the blog and then give him my number!
    ababynanny.com

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  12. #8 - My son was informally diagnosed with the sensory processing deficit through his IU testing at age 3/4 (it took a long time to get throught the system). He was able to get OT, PT and an Itenerent Teacher through the county/school. We are in PA so now that you are back here check for it. He was able to keep PT and OT through 2nd grade when it was deemed by all involved (yes I had the scary/happy thing like you mentioned in your last post) he no longer needed them

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  13. Last year i was finishing up my Bachelor's and taking a senior level Adolescent Lit class designed for people who were going to be junior high english teachers. I mentioned one day that my son had autism and one of my classmates asked "what's autism?" Blew my mind.

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  14. *Thank you* for writing this: "Instead of putting up a Facebook status post, contact your legislator and encourage him or her to fund autism research and education." While it's beneficial to know there are people who support autism awareness, reposting the same status without an additional, concrete proactive suggestion ultimately does as much for helping improve the lives of people with autism as randomly listing your bra color did for combating breast cancer...

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  15. Great blog. I have 3 boys on the spectrum - One with Aspergers, One with Autism (high functioning) and with with moderate autism - who was non-verbal but is now verbal (almost 7). I wish more people, and especially teachers knew about autism, and how to get the most positive interactions from my kids. It's obvious that my youngest son is disabled, but the older boys suffer from a disorder that on the surface looks much different. They have been labeled "Difficult", "behavioural issues", "immature", among other things. They are delightful, brilliant kids that have a different way of processing information.

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  16. thank you (as always) for this post. Especially #6. Today was our final day of neuropsych testing for our son. And at the end the doctor showed me a summary page which said there is a 99.9% likelihood that he will have a clinical diagnosis of something. Full analysis/report/diagnosis to come in one month, but still...I knew we were there for that reason and I was somewhat expecting it. But to see it there in black & white. And trying to hold back the tears in front of my son....let's just say I'm glad that part of it is all over.

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  17. Hooray for all you moms who courageously act as advocates for your kids, especially those who are early in the process. Advocating for a diagnosis is scary but positive - you can then plot a course for your child. The world and this country needs so much more education about autism. I have learned so much here and through links to this blog. My child (now grown) is neurotypical, but I think it's my duty to understand what is happening out in the world and find out if there is a place I can help. I also appreciate SRMM's tolerance of both views of autism activists: those who want acceptance and those who want cures. As an outsider, my heart is with the hope for a cure, but in the meantime, yes, acceptance, understanding and proper therapy provided by the government and INSURANCE is necessary.

    Keep fighting the good fight you guys. SRMM, can you recommend an organization to which donations would be most meaningful? I'm pretty much only aware of Autism Speaks, but as I understand it, their goal is more acceptance than cure.
    Thanks.
    ~physicsmom

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  18. As always, you are a rainbow of awesomeness!! You put into words what so many of us think and feel! Thank you for being a great voice for those affected by ASDs.

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  19. Physics mom--
    I fund-raise(when I can) for Autism Speaks because I believe in the research that they are funding, but as a mother of an autistic child, I will tell you now: DONATE TO YOUR SCHOOLS. My son attends a special-ed preschool in a very wealthy area and still they need to hold constant fundraisers. There are students, little three year old babies even, like mine, that are turned out of early intervention and into preschool but still need that intense one-on-one therapy. Every dollar you give to your county's special-ed budget will help those kids, so find out how your school system does it! You'll know you've contributed to Your community in a truly meaningful way.

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  20. This post is awesome. You couldn't have done a better job of helping me put the storm of thoughts in my mind into words. I totally understand the social b.s. My son is similar to me in that aspect (and more). Just get to it, say it, with less fluff and words.
    Thanks for sharing.

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  21. I've got an aspie boy, and relate to all of this. If you can believe it, the county case worker from the agency that helps kids with disabilities didn't know what Asperger's was. I had her leave my house, and requested a new case manager. Appalling!

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  22. Great post, one of the best ones I've seen for Autism Awareness month.

    My son has "classic autism", and I am well sick of people dealing with much higher-functioning kids trying to say how beautiful and special autism is. My child is beautiful and special, his autism is not. I always soften my opinion about how much I hate the hell out of autism, because when I speak my mind the higher-functioning come along with their happy-clappy opinions, never having experienced just how bad autism can affect a child (and I know many are worse than my son too).

    Part of the way forward is definitely better attitudes within the public, and higher awareness in general, but it's also looking for ways to lessen the highly negative impact of autism on people's lives qua autism (ie, not just because attitudes suck).

    I'll get off my soap-box now. Just saying really, love your post and your awareness.

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  23. To Amelia Grace: Thanks for the great idea. It makes so much sense to contribute locally where your contribution might have a bigger impact. I will follow up on Monday. Blessings to you all for your good work.
    ~physicsmom

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  24. I think that autism is diagnosed too easily...I really don't think social-awkwardness is a disease...some people are just a little different...

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    1. I think intelligence is assumed too blithely... I really don't think theorizing about medical conditions outside your expertise makes you smart. Some people are just a little arrogant.

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  25. To Anonymous, quote: "I think that autism is diagnosed too easily...I really don't think social-awkwardness is a disease...some people are just a little different..."

    I don't think social awkwardness is a disease either, but since autism isn't just "social-awkwardness" (and since autism isn't a disease either), it's not clear what your point is.

    And what do you mean by "diagnosed too early"? How early do you think it's diagnosed, and when would you "prefer" it was diagnosed?

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  26. A simple fact will help "anonymous" out....
    if autism were diagnosed too easily, then we would see a corresponding drop in the diagnosis of similar neurological and mental disorders, like OCD, ODD, ADHD, bipolar, etc. But we aren't. The rates keep rocketing up, while the other diagnosis stay pretty steady.

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  27. I have sooooo many things to say to "anonymous" up above (about autism being diagnosed to easily), but my Mom taught me to play nice in the sandbox.....

    So really, anonymous, seriously educate yourself (and maybe even shadow a child with autism, aspergers, etc.) before speaking. Because being "socially awkward" is heartbreaking, not only to the child, but to that child's parents......

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  28. unfortunately, a LOT of people don't understand the in's and out's of autism and the wide spectrum that it affects in our loved one's lives.

    That is what "raising awareness" is all about. While we may feel angry, it's also a great opportunity to raise understanding in someone who is obviously not understanding a whole lot.

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  29. I'm marking autism month by writing a letter to my son's former pediatrician. I find it deliriously sad that I have to educate an MD about behavioral issues and autism. UM, he doesn't bite because I'm a bad mom, and you can't beat autism out of a child.

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  30. wordstolivebymommy, you're incorrect when you say: "if autism were diagnosed too easily, then we would see a corresponding drop in the diagnosis of similar neurological and mental disorders, like OCD, ODD, ADHD, bipolar, etc. But we aren't. The rates keep rocketing up, while the other diagnosis stay pretty steady."

    Actually, rates of autism have gone up with corresponding decreases in other conditions: http://www.sciencebasedmedicine.org/?p=95

    But that doesn't mean autism is being diagnosed "too easily" (as anonymous says), just that the awareness of autism has increased, and that the diagnosis criteria were broadened.

    (And I misquoted anonymous with my original reply, I thought they said "early" not "easily", sorry about that.)

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  31. Your post is absolute perfection. I know where you are coming from...I have 2 boys diagnosed on the spectrum who are high-functioning (PDD-NOS). Thank you for sharing your insight.
    -Angela
    http://caffeinatedautismmom.blogspot.com

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  32. As usual, I get teary eyed and laugh at your posts! I have to agree with all of them, but #6 the most. Our son's diagnosis took over 9 months, and when it finally came, I thought I was just relieved to hear it. But then the doctor handed me a box of tissues, and I realized I was crying.
    Also, to the anonymous poster, I will say what I always say when people doubt the validity of the rising autism rates (some of whom have done it to my face), "Wanna come babysit?"

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  33. @autismandoughtisms my daughter is HF and let me tell you, I will never say her autism is beautiful and special. Not in our house! That annoys me just as much.

    And how much I WISH autism was "just" social awkwardness. Not here, at least.

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  34. I would love anonymous to expand more on that statement, though. Are you saying it about this one boy, or about Autism in general?

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  35. This comment has been removed by the author.

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  36. *I removed the original b/c I misspelled the name of the poster :p

    autismandoughtisms

    I read the paper you referenced, and this popped out at me... "the authors, however, caution that the number of subjects in their study was small [48 boys] and therefore it is difficult to extrapolate from this to the general population."

    But it's an interesting article nonetheless, and will definitely read it over again, as well as looking at some of the studies they cited.

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  37. Hello. I read your tweet about someone commenting on your child's autism diagnosis.
    I just wanted to write to you simply to say some of the most wonderful children I have had the pleasure to work with have been autistic.
    The spectrum is as wide and as varied as each of us are. I hate labels, but they do give us some point to start from. While I do not know what was said to you, sometimes people try to help and only end up doing the opposite. I can't imagine anyone making a seriously negative comment on a child, but that's just me.
    I prefer seeing the rainbows, not the clouds.
    I'm sure everything will be fine with your son -it's just learning what works and what doesn't...and that can be applied to everyone on this whole wide earth.
    My best very best wishes.

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  38. Amen, amen, amen!! I love this post. When my son was diagnosed with high functioning autism so many people said things like, "Well, you knew that was coming" or "Isn't it better now that you know?" and though it was true, their comments stung. Because like you said, it is NEVER easy getting that diagnosis!

    Also, you're right that so many people who SHOULD know about it and Sensory Processing Disorder have NO clue.

    Great, great post!

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  39. Diagnosed too early????? What... Some of us fight for years knowing there is a problem but struggling to get the doctors to listen and help us.

    Great write!! Whomever posted as anonymous clearly doesn't understand how it is as a parent!!

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  40. Excellent post! I too have the double helix of crap, replace allergies with eczema and everything else is on mine too.

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  41. I get annoyed with "anonymous" posters its like they are to chicken to stand up and be counted, but yet we still have to listen to them...

    Know this is categorized as a "adoption book" but I really would like to recommend to you "The Connected Child" by Karyn Purvis.

    I Use Nuro-developmental Therapy. It is expensive but not sell your self in back ally expensive. About $1400.00 a year because they train you do do the therapy at home. (and I've trained a friends 14 year old and I pay her 5$ to do it 2 times a week :-) But what I noticed is that almost every Sensory Processing therapy I have done is in the appendices of "The Connected Chid" think of all the money I could have saved!!! If I had read that book sooner ;-P The publishers have found so many "non adoptive" parents buying the book they are reworking it for general sale.

    My odd one out.. is currently working out a new song by ear on the piano. Because Daddy hasn't transcribe it yet. DOH! But if you ask her to do a world problem in math she can't parse "how many do you have left over" means you subtract. Because in her world that "how many" triggers only an addition response.

    Have you ever watched the movie about Glenn Gould... Now there is an High functioning undiagnosed Autistic man.

    I do know therapy has kept the Autism label off my child, Tho at least 5 times a year strangers ask if she is a high functioning Autistic child. She is such a social misfit. That was my choice to not have her tested because I was already selling my arm and leg for ND therapy. But that is a choice we as parents make for our kids. I choose "Developmentally Delayed Label." I hope upon hope that it is Just due to her time in Institutionalized care (orphanage).

    Then again I may just be swimming in the river denial... But I've seen so much improvement in her sensory processing issues though ND Therapy and The Spectrum Protocol Diet. That I keep swimming.

    *runs of singing Dories Song* "just keep swimming" is that a Crocodile or a alligator over there?

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  42. I always like to read your blogs. The connections to certain aspects of your children and life in general are comforting...and only a parent with messed up genes could appreciate one of my favorite things in life...When people ask why I am always sick I tell them: Because I'm wearing skin tight painted on bad genes, sugar!

    My daughter is autistic. She has played baseball with Miracle league for the last 3 years...when we are at games, the moms discuss who's turn it is to spike the gatorade cooler with adderall....it's nice to be around people who understand.

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  43. Fantastically said. I can relate to most of it, and I hope you don't mind that I "shared" a bit of it on my FB profile. And good for you, for being able to see the good within the struggle. I'm going to strive to do the same. Thanks. :)

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  44. It's great to see another mom blogging about the reality of autism. Although I have been on hiatus from writing for a while - getting involved in PTA at my kids' school - I am still experiencing the same situation you are. Stay focused. You're an amazing parent. I have 2 Aspies, and I can tell you that it gets easier in many ways as they get a little older. Just remember to breathe. All my best to you and Little Dude :)

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  45. I love this post!! It's so true about the school system. It makes me so mad that they don't really have any programs that have to do w autism! They don't even know it's autism month! I feel like i'm the only one that brings any knowledge of autism to the school!! just wanna scream!! My daughter is in kindergarten hopefully with her autism they will learn something!!

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  46. This is a great blog. Thanks for sharing this article about your experience with autism and how it can affect many families' lives. I'm new at blogging and will revisit often to share comments from my speech and language therapy sessions.

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  47. Having one with PDD-NOS/ADHD and one with Autism, I can relate. I often say that there isn't an single issue my kids have that I don't know right where it comes from. Sensory issues? That would be me. Social awkwardness? That's the husband. Here we were worrying that the kid would get my nose or his ears. If we had only known. Just wanted to say hi instead of stalking around in the shadows.

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  48. WOW> Anonymous, PLEASE take a damn class or something. Dear GOD.

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  49. I enjoyed your comment that getting the diagnosis of autism "sucks" I actually wrote to oprah before her show ended and I asked her to do a show called AUTISM SUCKS. I like that better than autism speaks as far as awareness goes. Wouldn't more people turn heads at that bumper sticker. Autism speaks sounds like there is a cure and there is not.
    My son started private OT when he was 18 months old 3 times a week covered by our insurance company for Sensory integration disorder. The rest of the diagnoses, PDD-NOS, ADHD, aural processing delay, visual processing delay etc...
    Anyhow a friend led me to your blog after I put a comment on face book recalling today's events:My neighbors babysitter just had the nerve to come over and say that Ben is the worse kid she ever saw she even mimicked a tantrum: uh its called autism research it. Then she said to the kid she was watching uh" he goes to alternative school don't play with him"...
    Talk about Stark raving mad
    Thanks for your blog
    Cathy Johnson (merkaujohnson@yahoo.com)

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  50. About what you said in #2, I had a similar surprising experience with a random stranger. We moved out of our old house in June, and had a moving company do all the packing. At the last autism walk we did, I had bought a bag of rubber Autism Speaks bracelets, and I give them to people randomly. One of the movers came outside with the bag in his hand -- he explained to me that his roommate's kid is autistic, and could he please have two of the bracelets in this bag (one for the roommate and one for himself)? Of course I said yes :D

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  51. "But what about the kids who appear to be typically developing, only to withdraw and lose skills?"

    That's just as likely to be genetic as nonregressive autism.

    Look at Rett Syndrome, a girl-only autismlike condition for which the cause is known - it's a mutation in the gene MECP2, on the X chromosome. Rett girls develop normally for around 6-18 months, then their head growth and their cognitive development slows down, and then suddenly they start regressing. They regress a bit, then stabilize, and go on as severely cognitively disabled girls with severe motor impairments (most classic sign of Rett Syndrome is compulsive hand clasping or hand wringing, and in general they have a lot of involuntary movements and difficulty doing voluntary ones). So, classic regression, purely genetic.

    And studies have shown that about 30% of parents of autistic kids have at least a few autistic traits themselves. This number is exactly the same whether the kid regressed or was always autistic.

    Sometimes kids are genetically programmed to regress. In Rett Syndrome, it's because the pruning of unneeded brain cells that goes on in infancy goes overboard, and useful brain cells end up getting pruned. In most autistic kids, the mechanism is unknown, but it's probably just as innate as that is.

    Oh, and research has found subtle pre-regression abnormalities in regressive autism, things parents didn't notice, but which can be seen in infant videos or when you study younger siblings who later regress as well.

    Another comment, regarding whether autistic people (and most I've talked to dislike person-first language, as do I) want cure or just acceptance, I think it's important to keep in mind also what *makes* a person hold the opinion they do. I know of an autistic woman who now speaks out against curing autism, but used to want a cure, and she said she wanted a cure because she hated herself and didn't want to be herself anymore. I have no way of knowing how typical her experience may be, but it worries me that many people may not be able to tell that kind of attitude from a more healthy desire not to have a specific problem. (Which is, incidentally, how I feel about my allergies and asthma. I'd love a cure for that.)

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  53. love love love #7!

    fb/autismwithaglassofwine

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  54. So, I know you wrote this three years ago but, being Autism Awareness Day again, I stumbled across your website and I kinda love it.
    Much of what you said here is very accurate in my life also. I have a little brother who's severely autistic, he's 17yo now and doesn't speak so far, he's also very drawn into his own world, but at the same time interacts with us in his own way.

    5. Even so, it's not the end of the world. Life goes on after the diagnosis, and in fact life gets better.

    Life gets SO MUCH better. Until my brother was twelve we had no idea what he had and when we finally got a diagnosys? He could go to school, he could have therapy... All kinds of awesome.

    By the way, I'm 22 now and found out when I was 18 that I have a high funtioning Aspergers Syndrome. It's due to my brother's diagnosis that I was able to find that out.

    Anyway, congrats on your incredible texts and I'm sorry if my English is bad, I'm actually Brazilian. How is Little Dude now?

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