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daisymommy
11-02-2012, 03:12 PM
DS#1 (10 years old) has had a medical diagnosis of ADHD since he was 5. I've always felt there was something more going on though. It just seemed "worse" than ADHD. But I've been put off by countless doctors who didn't think it warranted testing.

After fighting our insurance company for nearly a year to pay for testing, and then scrambling to find someone qualified locally in network to do it, we found a wonderful, kind child psychologist who could do the testing.

After waiting 6 weeks to get a diagnosis back from her, I finally had a long meeting with her yesterday.

I'm shell shocked.

The findings came back as high-functioning Autism (PDD-NOS).

I expected Aspergers. For some reason that didn't seem as "scary" to me. But actual autsim, that surprised me. He also still carries the ADHD diagnoses plus anxiety disorder. A triple whammy. She also feels he has some cognitive issues that may point to learning dissabilities, so the school will now be testing for that.

I feel like I'm walking around in a fog. I keep reading the paperwork over again to make sure I didn't read it wrong. It feels like I made it up in my head, that perhaps I got it wrong. But nope.

Where do I go from here?

larig
11-02-2012, 03:19 PM
Couldn't read without sending you some hugs of support. Your son is so lucky to have you.

g-mama
11-02-2012, 03:28 PM
:hug: Your ds is fortunate to be the child of a wonderful, loving, caring, amazing mother. I know you must be overwhelmed with emotions right now, but it's going to be okay. You've done a great job with him all this time without a proper diagnosis, nothing will change your abilities to be the exact mother he needs.

Beth24
11-02-2012, 03:51 PM
Couldn't read without sending you some hugs of support. Your son is so lucky to have you.


:hug: Your ds is fortunate to be the child of a wonderful, loving, caring, amazing mother. I know you must be overwhelmed with emotions right now, but it's going to be okay. You've done a great job with him all this time without a proper diagnosis, nothing will change your abilities to be the exact mother he needs.

Well said. Sending love and support your way.

sariana
11-02-2012, 04:02 PM
Didn't they recently change the terminology, eliminating the term Asperger's? I think high-functioning autism is basically the same thing.

My 8-year-d DS has ADHD and Asperger's (or whatever you call it). He is a wonderful boy who needs extra support in some areas.

Don't let the terminology get to you. Your son is still the same person he was yesterday, last week, last year.

boltfam
11-02-2012, 04:33 PM
:hug: Your ds is fortunate to be the child of a wonderful, loving, caring, amazing mother. I know you must be overwhelmed with emotions right now, but it's going to be okay. You've done a great job with him all this time without a proper diagnosis, nothing will change your abilities to be the exact mother he needs.

:yeahthat:

Green_Tea
11-02-2012, 05:51 PM
I am sure I would feel shell-shocked, too. :hug:

You are a terrific mom. I know that for a fact.

Your son is the same awesome kid he was yesterday and last week and last month - now you just know more about him, and can help him more effectively. Because you are a terrific mom, you'll get him what he needs - even if it takes a while to figure out what that is.

I don't know what the right next step is, but what I do know is that a diagnosis can be the best way to get the services and guidance you need. Hang in there. :hug:

Clarity
11-02-2012, 06:04 PM
Didn't they recently change the terminology, eliminating the term Asperger's? I think high-functioning autism is basically the same thing.

My 8-year-d DS has ADHD and Asperger's (or whatever you call it). He is a wonderful boy who needs extra support in some areas.

Don't let the terminology get to you. Your son is still the same person he was yesterday, last week, last year.
:yeahthat: To everything Sariana wrote.

I think the Asperger's change is coming in the next DSM, version 5. Here's the rationale: http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=97#.


:hug: mama.

lmh2402
11-02-2012, 06:48 PM
:hug: :hug:

no advice, but you know i follow your DS closely b/c so much of what you have described and relayed in the past is very familiar to me with my DS

i hope i can be half the mama you are and give my DS all the amazing support you're giving your DS

:hug:

i'm hoping the woman you saw who gave you the diagnosis would be able to help you figure out next steps?

JTsMom
11-03-2012, 09:03 AM
:hug: It is shocking, even when you sort of expect it.

elliput
11-03-2012, 10:42 AM
Where do I go from here?

Forward. :hug: The best thing you can do is continue to advocate for your son's education. First thing to do is make sure the school has a copy of the diagnosis. This will open some doors for your DS's education experience. If he doesn't already have an IEP, tell the school you want one.

Most importantly, keep believing in him. :love5:

kep
11-03-2012, 10:44 AM
Best of luck to you and your child! You have already done a great job as a mommy by following up on your instincts, and finding help for your child. Getting the diagnosis is just the first step, and it will allow you to pursue further therapies and options for your child down the road.

daisymommy
11-03-2012, 09:51 PM
Thank-you so much everyone, I appreciate the kind words and support :grouphug:.

essnce629
11-04-2012, 05:10 AM
No advice, but I just wanted to send you some (((HUGS))). I'm sure any diagnosis, even when you are expecting it, can be scary at first.

snowbunnies300
11-04-2012, 08:00 AM
:cheerleader1: Way to go daisymommy :cheerleader1: What a way to fight for your child. Good for you taking on the doctors and insurance companies. That is really a hard fight and you WON!

As other posters have said your son is the same beautiful boy he was prior to receiving the diagnosis. You now have more information and more amour/ammunition to obtain the necessary treatment/accommodations for him to reach his highest potential.

There are many, many PDD-NOS individuals who live lives full of prosperity. The world is full of ASD individuals who hold down successful employment, have married and have children of their own. Their minds think differently than others. They are productive citizens and we are all blessed to have them in our lives showing us that the "normal" way of thinking is not the only way.

Where you go from here is to take the information (diagnosis) to the school and get the services your son needs. If he doesn't have an IEP then they need to write on. If he has one they need to amend to add additional services. They will of course do their own testing as required. I highly suggest checking out http://www.wrightslaw.com/ and looking at Wrightslaw: From Emotions to Advocacy, 2nd Edition. They have other books/DVD's but this is a good one to start with as it is a good road map for what you need to do to advocate for your child at school.

I also suggest that the best thing you can do in working with the school is document, document and document. Then always keep in the back of your mind that you will be working with these same individuals for YEARS to come. Any time you want to scream at them try to remember YEARS of working with this person ~ is it worth letting them have it or taking a minute to collect your thoughts and taking the better with honey than vinegar approach. I have chosen the honey approach and found that when I request something I get it almost immediately. I say I want something done and it is done. They seem to want to keep my happy as I make their lives easier. I am still a demanding parent but they see me as being so flexible.

I guess and example would be that I take my kids out of school for special AIT therapy. We do this therapy every six months and it is twice a day for two weeks. In the beginning I took DS out of school for the full two weeks. Then it was brought up to me by his teacher that we should send him to school during that time and they would just deal with the upheaval. I reminded the teacher that the therapy times are different each day. No problem. So some mornings I put DS on the bus and he was at school for only 1 hour before I came to pick him up to therapy. They met me at the door so I didn't have to come into the school and sign him out. After the 1/2 session I drove back to school and they again met me at the door. Later in the day I would have to go back another time to pick him up and again they met me at the door. Rinse and repeat for two weeks with pick up and drop off times changing every day. Most school in my area do not allow the students to do this. Parents in the waiting room at our therapy center are shocked at how accommodating our school is with AIT. I truly believe that had I been unaccommodating in other areas the school would not have been so open with this arrangement. Now all three boys are in school so 3 classrooms are disrupted when we do this therapy. It is a lot of planning on behalf of the teachers/aides. They bend over backwards for us and I pretty much do my best to make sure they know we appreciate their hard work. That means (for me) that I bake for them at each and every parent/teacher conference & IEP. I bake just for the heck of it and bring it in to them. I purchase flowers a couple times of year (cheap little $5-$7 bouquets) and let me tell you they think you've hung the moon when you bring in flowers. It's not much but it tells them you appreciate them and they appreciate you and your child. Bribery? Maybe. Call it what you want to but I will do what is necessary so that my children receive the best education.

You have a lot to take in right now but a good portion of the fight is over. You have the diagnosis and can now move forward and know what you are dealing with. You now have a road map. There will be twists and turns, straight-high speed smooth roads, valleys and mountains but you have a map and you are no longer driving without road-side assistance.

daisymommy
11-04-2012, 09:18 AM
Thank-you so much Snowbunnies! I was hoping you would chime in. Please feel free to PM me any other advice you can think of (or post it here).

mytwosons
11-04-2012, 05:45 PM
:22: it can be so hard to get the diagnosis, but nothing has changed with your son.

DS1 was PPD-NOS and Ive seen kids with Aspergers who are very severly affected and seem much lower functioning.

Have you considered consulting a DAN! Dr? DS regressed to full autism, but is now recovered. No one would know his past...

eta: totally agree with snow bunnies re honey. I would even bring refreshments to our IEPs. sadly, the school personnel are used to seeing parents who don't have much interest in their child. I was so grateful for their assistance and they were wonderful to work with.

TwinFoxes
11-04-2012, 06:35 PM
No BTDT, I just wanted to send you support. :hug:

Gena
11-30-2012, 03:19 PM
I've been away from the Board for a while, so I just saw this. Now that it's been a few weeks, how are you all adjusting to the news? Has it made any change at school or in your home life?

Hugs. :hug: