Today was the big day - "official" diagnosis (kinda long) — The Bump
Special Needs

Today was the big day - "official" diagnosis (kinda long)

Chris has been receiving services since he was about 20 months old (he's now 4 1/2) and it was in Oct. 2011 that we first heard the 'A' word used in relation to him.  So I spent the next year or so kicking and screaming (silently) about it and pretty much making justifications for all his behaviors and actions but slowly as he got older and his delays became all the more apparent, I don't even think I realized when it actually happened, but I just sort of fell into an acceptance of the way things were and I started using the 'A' world all the more often.

He's been evaluated by child psychologists and most recently by a school psychiatrist and they all agreed, we're looking at ASD, but we'd never actually gone to a developmental pediatrician.  Why?  Not really sure but with the new laws in NY related to insurance and autism related services, and with his move to Kindergarten we knew we had to.  Four month wait list, but last week was appt one and today was the follow-up.

It was what we already knew - ASD.  "No doubt."  And no, the floor didn't come out from under me.  It was sort of just a resigned sigh and yep thought as much, now does Chris need a diaper change?  However, one of my suspicions was confirmed today.  Chris brought a plus 1 to the ASD party - ADHD.  I've suspected it for a long time and so has DH (who, himself, has ADD).  The doctor did qualify it.  As we were talking in the office.  Chris was amusing himself with some colored pencils and some paper.  The dr. pointed out that while his teachers and therapists all agree that he has serious attention span and focus issues, they all pointed out that he CAN focus and pay attention, when it's something he WANTS to do.  Like the fact that he'd been drawing for 10 minutes straight.  He *can* pay attention - he just doesn't want to - which is why she (and we) are against even considering medication at this time.  

So yeah, there it is - ASD + ADHD = my beautiful crazy pants little boy.  And the world didn't stop spinning.  
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ToastieSimonsPrincess_Lily[Deleted User][Deleted User][Deleted User]typeset[Deleted User]

Re: Today was the big day - "official" diagnosis (kinda long)

  • I'm happy you have come to accept this. Remember, he is still the same little boy as before the diagnosis -,now there is just a name for his struggles.

    Do you know what support is needed? To help me wrap my head around the diagnosis process (I still am still going through the DX process), I spoke with adults who were diagnosed with ASD and asked them what they wanted from their parents.

    Its a hard pill to swallow, but it seems when you get to the acceptance stage, its much less stressful.
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  • Princess_LilyPrincess_Lily
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    edited May 2014
    I was seeing signs of PPD/PPA, sleep deprivation and the emotional rollercoaster of the evaluation itself, so I stopped - I needed a minute to focus on me.  

    There were three words mentioned in previous meetings, touching on inattentiveness, constant movement, anxiety and ASD (Aspergers). I'm not sure what is the final say is yet. 

    The forum I went to supported us to continue the evaluation, and we're willing to describe their own personal struggles.  Some had "pure luck" and were successful without a DX or support in place - by simply winging it. Others had turned to drugs or suicidal thoughts because they felt they were a social outcast without knowledge of their difficulties, and were in an abusive household.  I read that difficulties, without treatment can cause a multitude of problems - that early treatment is key.  I can't help be his subconscious forever, but I could give him the tools to teach him, to guide him when I am not around.

    As some of you know, struggles have been substantial - however many have improved. Irregardless struggles are present, and may in hinder his education (or they may not), I just don't want him to be written off as a "bad kid" which I see happening if we ignore this, because his difficulties are hidden.


      

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  • -auntie- said:
    Welcome to my world. No, really.


    I'm not sure what to think of this. I'm sort of surprised a developmental pedi would express the concept of ADHD in such a way. Specific to ADHD there is a notion of "hyperfocus"- it's what a lot of unimformed lay people and parents in denial glom onto as proof a child doesn't have ADHD when, in fact, it is a feature of the condition. 

    Sometimes it helps to think of ADHD as a delay in self regulation- think of Chris' inattention as a function of not quite being in a place where he can delay gratification or resist impulses. As he matures, he'll likely get better but still lag behind peers and be impacted by the executive function, central coherence and ToM deficits that ASD brings to the party that doesn't generally impact pure ADHDers. That means skills will be emerging- they'll be available to him at times and out-of-reach at other times. The way your doc expressed it suggests s/he feels Chris has a whole lot more control- as if he's making a choice to attend or not. And that would sort of piss me off because I've heard it from the sort of teachers who are phoning their work in.

    When you have ADHD, you can't just will yourself to focus and attend. Especially when you're only four. At least not for long stretches of time. Just because a child is able to perform some task or meet and IEP goal on an occasional basis doesn't mean it's something they can routinely access or around which they have mastery.

    I'd keep an open mind around meds. Not that I would medicate a four without compelling risk of self endangerment. But I will say meds have been a very important part of out tx plan since about 8. ASD brings its own lack of focus- often anxiety and the distraction of obsessive thinking which when combined with the impulsivity, poor focus and external distractability make for a kid who is only physically there. This can have consequences beyond learning- ADHD has its own price in the social realm.

    We got into a situation where DS's insurance refused to cover the cost of his full ADHD prescription- even after his psychiatrist made a written plea stating that it was the amount DS needed in his medical opinion. No dice. FTR, DS has been on this dose for almost 6 years. DS's grades came in and they were not his usual level of work. He came in with 3 @ B+ where an A would be expected because focusing on lectures and the executive function details of managing his workload was harder for him. His self esteem took a real hit and he missed out of $2K in scholarships. He'll be getting his full dose next semester if I have to hang in back alleys to procure it.
    I totally thought of you when she said "Autism + ADHD".  

    Yes, when she brought up his ability to focus on what he was doing, I was a little confused as well because, with DH having ADD, I have some insight and that statement made me think of how I sometimes describe DH.  When it's something that interests him, he is laser focused. When it's something he *has* to do, forget it.  

    I get what you're saying about his ability to control those impulses.  That's one of the more common used phrases in his evals by his teachers "high impulsivity" "impulsive behavior" etc.  I don't think Chris has anywhere near anything resembling control over this just yet and personally, I'm not opposed to medication, but I am reticent to start it so early.  I want to see what sort of approach his kindy teachers will take and see if it becomes a matter of it being necessary from the get-go.  

    Everyone seems to agree that if he could only pay attention (lol, oh if only!), he'd do very well.  


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    Princess_Lily
  • McRib said:
    I'm really glad you have some answers! And you made it with out falling apart. Finding out my son had ASD was one of the worst days of my life, truly. You sound very strong. My son was diagnosed at 2.5 and we 'threw the book at him' in terms of dietary/medical and behavioral interventions. he's come a huge distance in that 1.5 years. The biggest is probably his ability to attend. Though I credit most of his changes to diet and finding out what was going on medically, I can say that ABA has taught him how to attend for such longer periods of time- we also may be looking at ADD at some point but I think starting services and ABA can really help your kiddo.
    Not at all - the whole strong bit.  When I first heard the 'A' word, like you, it was the worst day of my life.  I don't think I ever cried so hard in my life.  The next year or so was extremely difficult - it didn't help that I was also pregnant so you can imagine the water-works.  

    But like you, my little guy has come a long way since 2011.  He still has a hell of a long way to go.  He did ABA while he was in early intervention but when he went to pre-school they thought he'd do better with a different approach.  DH and I are unsure as to what approach would work once he goes to school but I think he might need be better served by the structure of ABA but I worry that he won't be able to generalize.

    So many decisions.  

    One day at a time.
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    Princess_LilyMcRib
  • Maybe the ability to hyperfocus will help him in his middle age!  Does he tend to take apart DVD players, or build amazingly high skyscrapers the age of 4?  He may be able to harness this "energy" into his career later in life.
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  • Right now his hyperfocus is on numbers and shapes.  I forget where we were and he said "octagon" and DH was trying to redirect him because he hadn't seen it but Chris kept at "octagon, octagon, octagon!" and then DH saw it.  The clock on the other side of the building lobby - was shaped like an octagon.  
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