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Newly diagnosed

652 views 9 replies 7 participants last post by  christinelin 
#1 ·
My 5 yo DS was just diagnosed with Asperger's Syndrome. I have known that it was coming for a couple of months, but I am still overwhelmed by my grief.

I am also feeling overwhelmed by the task that is before me -- to teach him everything about how the social world works. He is already in a social skills playgroup and we will be starting OT asap. Just the level of detail and complexity of what I need to teach him is daunting. I don't know what to start with or what to concentrate on. I don't know which therapies to try beyond those two things, which were recommended by our psychologists.

I dread calling my mother to tell her. People have so far had such varying reactions. Some have said, "Oh." That's it. Some have been amazing and supportive.

I'm just sad. I wish he and I had been dealt a different hand.
 
#2 ·
Grieve if you need to, but the world is not over. I grew up with undiagnosed Aspergers and no one even gave a second thought to trying to teach me social skills, so I was miserable for most of my childhood, until I took a turn for the better in high school and taught myself these skills. (Sort of; I'm still not perfect, but most people wouldn't guess I had it. I lead a totally "normal" life now FWIW.) It's GREAT that you were proactive enough to get a diagnosis this early. I'm not sure of the severity of your DS's condition, or his particular challenges, so feel free to elaborate on it as you feel up to it.


Also, have you checked out wrongplanet yet?
 
#3 ·
Thanks for your response, Alpine Mama. It is soooo reassuring to hear about adults living happily.

My DS has mostly social challenges. He just doesn't know how to engage or stay engaged. He does not have any complicating/coexisting conditions (no OCD, no ADHD, no behavioral issues). He does have some sensory issues. I asked the psychologist if she would say his case is mild. She wouldn't go there, but did say that his prognosis is excellent.

I do want to spare him as much anguish as I can around social stuff. I have already seen him excluded (kids can see his issues more easily than adults) and it is devastating. What you describe about your social challenges is what I fear most.

I will check out wrongplanet.
 
#5 ·
Hi,

I just wanted to say hello and let you know that thing may be overwhelming now but it will fall into place. I swear.


My oldest son (five in December) has AS also and has come so far since his dx last fall as to social skills. He is in a social skills group at school as well as a private one. I truly believe that this has helped his ability to engage with peers and also lessened his anxiety in social situations. He is still overwhelmed in large unstructured groups, but I see his growing social confidence and skills. He actually made a friend at the park last week, which was the most amazing thing ever.
:

As another poster said, look out for teachable moments.

Is he in school? My son also gets a lot of in-school social support (written into his IEP), which has also helped.

Also, have you hooked up with any other parents of AS kids? Some communities have some great supports. Here in New England we have the Asperger's Association of New England, which is a great resource.
 
#6 ·
If I had to give one tiny bit of advice, based on my experiences... I would gently try to teach to him that the platitudes aren't always true. Like, "if you're a nice person, people will be nice back to you." Or, "it's what matters on the inside that counts; outside is just superficial." I always took those things for face value. I never understood that people are so ready to judge you based on little things like the way you dress. If I had understood that, I could have made simple changes that would have let me blend in a lot better with the rest of the kids.

I'm not sure how applicable that is to a five year old, but it's a skill to teach, definitely. Camoflauge.
 
#7 ·
Hello! My son also has Aspergers. We found out when he was 5, and he is now 6, so we've had a year to process. I have to say that when we found out, the people around me were sad, but, to tell you the truth, for me, it was an "ah hah!" moment. In the previous 5 years of his life, I had spent a lot of time trying to figure out what I was doing wrong as a parent, reading discipline books, etc. When the therapist finally told me that there was a reason he did things differently, I was actually a little relieved.


And really, knowing has made a huge difference. I approach things differently for him, can understand more of why he does the things he does, and in the last year he has learned so much.

He is an incredible kid, with challenges (yes, for him, most of these are social), but with strengths too.

My advice would be to address your son's challenges, but look for those strengths that will help him! People with Asperger's tend to see the world a little differently, and that is not a bad thing
 
#8 ·
I am in the same boat. My 5 year old DD was just diagnosed this week as well. I am not the least bit surprised, but there is still that, "oh my!" factor that you have to deal with when telling others, as well as the personal grief of knowing you are in this for a life time. On the other hand, is your DD any different than he was before you heard those words? You have probably been coping pretty well so far, and now you have more information to help you cope. It sounds like you are pulling together your treatment plan, which is what I am also doing. good luck finding all of the resources you need. I fyou happen to be anywhere near CT, I would love to compare notes.
 
#9 ·
I think most parents are sad at first. It takes some adjustment and for me there was a grief period. That's not unique to autism and give your self space to feel what you feel. Things will look brighter as time goes on.

What has helped me know how to help my son make "navigating the relational world" discoveries is RDI. Relationship Development Intervention. http://www.autismweb.com/rdi.htm I really like the program but it is pricey if insurance doesn't cover it (we get it covered because our therapist is a speech therapist). I say it's pricey but in actuality it's cheaper than our OT was and far cheaper than ABA and similar programs. But like any professional provided service it's expensive. For our therapist we pay $300 a month (though insurance covers 40% of that and then 100% when we hit the max. for Andrew). For OT we paid $300 per session and had one session a week. So it's relative.

My general recommendation to people is that it's usually better to just sink into the diagnosis for a while and then after the emotions die down explore the options and see what might help your child with his particular issues. Some decide their child doesn't need anything.

The beginning can be dark and it's hard to hear those words. But it does get easier.
 
#10 ·
Thanks for the responses everyone. I will definitely be looking into RDI. I have already read the book on it.

I wish I was near you, mamajody, but I am in Northern California. If anyone else is and has specific provider ideas, I would be grateful for those.

Alpine Mama, I will definitely be working on heading off literal interpretations of things.

The social skills group we are doing has an attached parent support group. I have also been calling around to find more contacts. Our psychologist didn't think DS would qualify for school services, but we are starting with a Child Study Team to see what they think.

It's also just good to hear it gets easier. Thanks.
 
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