View Full Version : My 8 y/o has been ADHD++ -now Aspergers...


cacaeb
05-21-09, 12:25 PM
Hi, all- I've written previously about my son. He's now almost 8 1/2 and newly dx with Aspergers. Since there's a familiy hx of ADHD they're considering it co-morbid, rather than "what looked like ADHD is really AS".

Once they named it, I saw it. It fits.

And, it feels late in the game- he's been in tx and medicated since age 3. I'm in shock, grieving, relieved, and angry all at once.

I'm wondering if any of you have experienced a late diagnosis of a spectrum disorder after years of treating other things.

I'm in a weird time warp- as though my baby was just born with a birth defect - and they're just gettting around to telling me.

As a clinician, I (logically) know how hard it can be to accurately diagnose
a kid with a complicated presentation. As a mother (emotionally),
I'm furious and beyond bereft

He is brilliant, anxious, aggressive, crazy-verbal and AWARE of his differences.
He has masked his social defecits with his vocabulary and ability to charm adults.

I am sad for him, sad for us, and not feeling terribly hopeful at the moment.

I'd welcome input on how others cope with the grief inherent in a spectrum dx.

Thanks-Amy
(I need to change my sig- he's off risperdal and
now on abilify-too early to tell...)

speedo
05-21-09, 06:14 PM
The doctors tend to not diagnose asperger's in kids under 8 years old , largely because some developmental milestones have not yet been reached before about the age of 8 years old. As a result, some kids get diagnosed with ADHD early on, and later diagnosed with AS when they are old enough to clearly diagnose with AS.


Me :D

Lady Lark
05-21-09, 06:29 PM
My son was 7 or 8 when he was diagnosed with Asperger's. it's hardly too late to help him. We found a great play therapist, and got the correct medication, and he's been thriving. It took some work to get here though, but it's hardly hopeless.

cacaeb
05-25-09, 09:50 AM
I appreciate folks' replies- I know it's not hopeless- I was feeling
hopeless at the time...I know there's a difference between feelings and the reality..otherwise none of us would make it:)

I'm going to post a new thread- really curious about how y'all dealt with grief....Thanks again.

γ-quantum
05-25-09, 03:10 PM
well, i have been diagnosed with a lot of stuff that just didnt fit me until i was diagnosed with ADHD. one doctor also said i have asperger's on that way; i canceled that out, as i thought i could explain it with ADHD. at the ADHD clinic, the doctors told me they "cannot rule out nor confirm asperger's". now i have applied for an ADHD clinical trial / exam, and the doctor - who works with ADHD and autism spectrum disorder kids, especially - said she immediately thought i had asperger's because my speech and what i said etc. was so typical. hmm, not sure - i am awaiting proper evaluation for this.

anyway... dont take this like a fatal diagnose, like leukemia or something horrible... you said you are shocked, angry, sad... all that. it may be a horrible diagnosis for you, but it does NOT have to be a horrible diagnosis for him (and thus not for you either in the end, if that makes sense) - if he gets the right support. now you DO have a diagnosis, you can act accordingly and protect his soul from harm (soul, as in, the parts of his brain that control personality, emotions, etc., and are too complex for us to understand, so we just call them 'soul').

i cannot really give you advise HOW to do social training and all that, but it's important that you closely monitor especially what is going on at school. ask his teachers, make sure he is comfortable at school. he may not be able to tell you that he feels bad and why if he is e.g. being bullied... that was at least the case for me, i could never put anything to words as a kid, and thats what probably damaged my 'soul', because i couldnt get relief and help.

also, be careful about medication - adhd medication may help him a lot, or make him feel worse, but maybe he is not able to express either.

as you said - he is brilliant and aware of his difficulties. he will learn to compensate for his difficulties eventually - but you can make things a LOT, LOT easier if you give him a hand while he's a kid, as he's vulnerable - and, no matter how bright he is, likely not able to understand a lot of things... thats what caused anxiety in me, anyway. like i so didnt understand why, WHY, WHY my beloved dad left me in the classroom, alone, with all the kids... what? i HAVE to go to school? WHY? i dont understand! dont leave me here! you said i would learn here! but i learned to read and write from YOU, why do you just abandon me in this horrible and scary situation now? - that's how i felt, while others were laughing at me because i was crying like it was the end of the world. be careful that such situations dont happen. as i said - i dont know HOW to make things easier for an AS kid, but i've experienced what makes things worse / doesnt improve anything. personally, i live up to the quote by marie curie: "nothing in life is to be feared, it is only to be understood" - and that would've been telling me the scholar system as you'd tell an adult, not in kiddie-speak - and in-dept please, i want to know every detail, because if i know every detail (can you take a photo of my future classroom, maybe?), i wont be as scared. exact plans rock, too - like you telling me the exact position where you'll fetch me from school, not just 'in front of' school.

just some ideas from my point of view... no idea if they can be adapted to anybody else. maybe your son is even well integrated into the class, i dont know. maybe he's totally different to me when i was a kid - everybody is different, anyway. hope this helped somehow, though...

Dizfriz
05-25-09, 05:25 PM
cacaeb
"
I'd welcome input on how others cope with the grief inherent in a spectrum dx.
Here is something I wrote a while back on grieving because your child is ADHD. While it was aimed at ADHD, the general principles and metaphors can also apply to other disabilities. It isn't perfect but it seems to have been of help at times.

http://www.addforums.com/forums/showthread.php?t=57911


I think that not enough attention is paid to parent's grieving over disabilities and it is so important.

------
As a note: Asperger's is so hard to diagnose in younger children. I have caught a number of cases but I have missed some too. In one case where I knew I was missing something with a child about the age of yours, I referred to a person with 20 years experience with this and she had to refer to a diagnostic expert to be sure.

You have the dx now. You have some ideas of where to go. Many are missed until adulthood and I think very many are never correctly diagnosed. They struggle and don't know why. Too often a life unfulfilled.

It was your efforts, your determination and your refusal to give up that enabled a good diagnosis. Be proud of your efforts and go from here.

Dizfriz

cacaeb
05-25-09, 08:26 PM
- I've read it- you capture it well. thanks for reminding me:)

mctavish23
05-25-09, 08:45 PM
I wish you much good luck in your treatment efforts.

Remember too that this isn't an exact science, and that the 2 disorders can & do often

overlap.

While this doesn't make matters any better,as has already been said, grief over a

diagnosis is common.

I (personally & professionally) view a diagnosis as a good thing.

Given that the reality of the disorder can't be changed, it is then a positive thing to

determine the nature of the problem,as that provides a starting point for treatment.

Lastly remember that,just as there are individual diffferences among people, there are

also degress of severity for every problem.

Once again, I wish you and your family all the best.

tc

mctavish23

(Robert)

cacaeb
05-26-09, 12:54 PM
Thanks for your kind words....I appreciate all the replies and
information. It certainly helps to know others struggle with this,too.
I wish you all peace.

-Amy

Lunacie
05-26-09, 02:01 PM
An online friend suggested to me about 6 years ago that my oldest granddaughter and I both have ADHD. I did some reading and everything just fit, it all made sense. All those years of struggling and feeling worthless, and finally I understood there was a real medical reason. I was 52 at the time.

About 3 years later we realized that we needed to get my youngest granddaughter evaluated, and have a tentative diagnosis of Autism (PDD-NOS) from the family therapist. Recently went to visit with a childhood development specialist and filled out more eval forms, and we're wating to see if he confirms or changes the diagnosis, and adds more to it. From the first meeting he said she probably has an Anxiety disorder as well.

It took another five years to convince my granddaughter mom and dad that she needed to be evaluated, she scored almost off the chart for ADHD, and has been taking Concerta which has made a very big difference for her.

So, once we got things moving on diagnosing and treating the girls, I asked the therapist if we could do an evaluation for me. I was curious to see if that confirmed my belief that I have ADHD-Inattentive, and was also curious about Anxiety and possibly Asperger's. And the evaluation did indeed confirm that ADHD-I is my most prominent trait, also indicates a little ODD, some Depressive disorder, Generalized Anxiety, and some Separation Anxiety. That's a butt-load of diagnosis at the age of 58, but after years of denial that it was anywhere near that serious, I'm actually feeling relief now that I understand so many of the issues I've gone through. Especially in my marriage.

I guess I don't look it at as being a "life sentence" so much since I've already lived more than half my life without knowing. Now I know what is going on and I'm able to think about ways to deal with this. Won't be easy since I don't have health insurance, but I think the first thing will be to ask the doctor about something for the anxiety/depression. I guess I figure the OP and her son have a 50 year head start on me! :)