13 Comments

  1. ouremuk66
    September 21, 2015 @ 10:53 am

    Since the Aspergers classification has been removed and people (in the UK certainly) are being diagnosed with “autism”, I’ve been asked lots of times what my children have/are. I just say autistic, as anything else seems to provoke a spate of arguments about how I can’t possibly be right.

    Apparently my oldest son “can’t have Aspergers” because he can maintain eye contact. Etc etc. It’s a spectrum and I have seen for myself how all my diagnosed children (3 so far) can move up and down it on any given day.

    New to your blog, really enjoying reading your thoughts.

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  2. Dana Park
    September 21, 2015 @ 11:48 am

    Every time I read your blog, I feel as if I am looking into my own life (minus 2 children). My middle son, Triston, was label at around 3 years of age. The original label was Aspserger’s disorder, but has since been changed many times as, like Jack, he is a touch of this and a touch of that. He is now 14 years old and is doing better at controlling his temper, although he still has his days. His latest is asking insane questions to me like “Am I a human or an alien?” or answering questions with answers insanely, like recently when his older brother asked him the 3 phases of water and he answered “Pizza” (Pizza water does not sound appealing to me). Each and every day, like you, I wonder what his future is going to be like, but all I can do is live in the moment and prep him as best I can.

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  3. Jeff
    September 21, 2015 @ 12:47 pm

    Nailed it.
    Our son (“Jack” as well) started on his alphabet soup journey early. First, it was ‘SID’ for Sensory Integration Disorder (now itself known as Sensory Processing Disorder to avoid the confusion with Sudden Infant Death Syndrome or SIDS). Then as we entered a special mixed typical/atypical pre-school program through our District he was labeled as ‘OHI’ (Other Health Impairment). From there (all without leaving my gaze) he became a child with ADHD-Combined (not to be confused with regular ADHD or even ADD). Of course, as his frustrations increased from his anxieties, we had to seek out therapy for what might be ODD (not his behavior — no, short for Oppositional Defiant Disorder). It seems that many times a diagnosis of ADHD (etc) can block or mask a diagnosis if ASD (http://www.medscape.com/viewarticle/850927 ) so while you are dealing with the ADHD, you may be neglecting the ASD (leading to a build up of frustrations and anxieties)[note: then you read articles that scare the stuffing out of you by warning you that if you do not address the ODD, the child can grow into a diagnosis of ASPD (Anti-Social Personality Disorder). But……after a fight in the PPT we sent him to the Yale Child Study Center (YCSC) where they confirmed that he had ADHD alright — right alongside his PDD-NOS (he also has some GI problems but that is another alphabet trail). From there the PDD-NOS was judged to be Asperger’s which has now been rolled into ASD. Well the other day he asked me if he had ‘Autism’ and I told him “yes”. I was expecting some big father/son talk or discussion. Instead, he said — “good”. It seemed that he was then eligible to play on a Minecraft server called ‘Autcraft’ that was designed for kids on the spectrum and was a safe place for him to play because they did no allow bullying. So for me, the only letters I need to describe my son are O.K.

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  4. Chloe
    September 21, 2015 @ 1:31 pm

    I ask myself the same question everyday….is it autism, asperger or just quirkiness….. He’s officially diagnosed (by 3 sources even) but I am on the fence about it…. going one way or another…..or another depending on the days and the behaviors….
    From my perspective, he has CMS (flapping/pacing) can happen in non autistic people….cognitively fine….odd socially and late in speech (like his dad used to be)…. He’s 4….let’s wait and see and do the best we can in between.

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  5. Autism Mom
    September 21, 2015 @ 2:21 pm

    “It had been a long afternoon of reminding Jack to finish his homework and taking away the computer and listening to him scream for the computer. Now, he was clutching his notebook in both hands and threatening to light it on fire.”

    yeah, right down to threatening to set the homework on fire …

    Reply

  6. SleepyMom
    September 21, 2015 @ 3:24 pm

    When I saw your title I thought yes, someone else knows about the “quirky” diagnosis! In our final meeting with the psychologist that evaluated our then 5yr old for Asperger’s she used the word quirky so many times I felt like we should be able to write it down on school forms and get services for him. She did not diagnose ASD but did diagnose ADHD, anxiety (particularly social) and sensory processsing issues with the ever present reminder, “he is just one quirky kid; I mean just the way he thinks and processes is so quirky”. To this day I think it’s about as good a descriptor of him as anything but alas “quriky” does not get you special services. Today was a new thing at our school, “Independence Day” where they wanted every single child to use the car rider line. Since our son was crying at home even before leaving, anxious about all the terrible things he was sure would happen at school, unable to remember the fun he’d had other days but instead focused on everything about school that is overwhelming: the noise, too many kids, no personal space, being touched and talked to by “strangers”, chaoitc recess with so many children he can’t possibly participate, etc, his dad walked him in as usual to ease the transition from home to school (leaving home to go anywhere is a challenge, a hump to struggle over each and every time). Except being walked in wasn’t calming today as “strangers” kept “encouraging” him to be independent with words and pats which were very agitating and overwhelming and the routine was different because they had to stop and sign a book to get in and receive their guilt trip. If only they understood all the work that goes into getting my “quirky” child to school each day, maybe they’d realize he’s being a lot braver than all the kids who rose to the occasion of Independence Day.

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  7. oshrivastava
    September 22, 2015 @ 7:15 am

    Reblogged this on oshriradhekrishnabole.

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  8. Fiona
    September 22, 2015 @ 12:28 pm

    Thank you, Carrie, for your beautiful words which, as always, go right to the heart of things. Always a pleasure to read – through the tears! ?

    Reply

  9. Sarah
    September 23, 2015 @ 10:41 am

    My daughter also has autism (or is it aspergers?). A generation ago, she would just have been “quirky” or “weird.” I really recommend you read NeuroTribes, about the history of autism — among other things, it talks about how the definition of autism has grown and shrank over the years and existence (and non-existence) of a separate Asperger’s diagnosis.

    Reply

  10. Amy
    September 23, 2015 @ 2:20 pm

    Beautifully written. Our lives are so similar! Five kiddos, and I thank God every day, because sometimes Ryan’s siblings are more helpful than I could ever be. Thank you for this blog. I love reading it!

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  11. Karen in Toronto
    September 24, 2015 @ 9:34 am

    Don’t worry so much about the ‘sqeeziblilty’ of your child as they approach their teens. They are storing up the fat reserves necessary for the growth spurts to come.

    Reply

  12. K.D.
    September 24, 2015 @ 4:09 pm

    At age 3, she got a standard autism diagnosis which has always created disbelief since that makes the average person think of “classic” autism and she doesn’t “present” like that. But like yours, although there are a lot of Asperger’s traits, there was a language delay which has ruled that out. Asperger’s would be better since it’s so trendy and there’s so much swag you can sport to be accepted and understood. Now at age 8, the most recent expert opinion for us is PDD-NOS (even though it’s all ASD in the DSM now) and that doesn’t look so cool on a tshirt.

    ps. mine can write code but can’t tie her shoes or eat with a fork.

    Reply

  13. Christina
    May 23, 2016 @ 2:40 pm

    Thank you Carrie. I cry when I read your posts. My son is 9 and his ” behaviors ” have been changing and evolving/regressing over the past two years. He met all his milestones until age 5. Nobody can decide what his label is. I am so tired of people telling me he doesn’t fit here or there. He doesn’t match this or that diagnosis. They say he’s too old to have a developmental delay but there’s clearly something wrong with him.

    I just want help! I mean how do I help him ( or me for that matter) to keep all his blankets in a perfect rectangle without any bumps or wrinkles so he can sleep through the night. He wakes up many times a night needing me to fix them and make sure the sheets are straight. Each blanket has to be put on one by one or he screams, cries and hits his head. The therapist says its OCD and to just ignore it. I tried that and found him crying alone in the kitchen because his blankets were wrong, of course. How can he go through a day of school after a night like that?

    The same with his weight and food. He will only eat certain foods and has to have pretzels with every meal, no matter what or he is devastated.

    Anyway, I keep thinking someone in the medical profession can help me. The therapist put him on anti anxiety meds to see if it can help him focus and be calm. He asks me if he’s focused yet. How long will it take.

    Your blog brings me relief. We are not alone. I am so glad you have chosen to share your life with us. It helps more than you’ll ever know!!!

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