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Autism - Support Across the Spectrum Autism - Support Across the Spectrum

DS got his official diagnosis today.

Posted by on Feb. 1, 2013 at 2:22 AM
  • 15 Replies
PDD-NOS. I'm not sure how to feel. Relieved that we have answers? Sad for what the answer was? Happy that part is over? Overwhelmed with all the new therapies and pre school they want to start asap? Maybe all? I'm not sure... So many feelings and emotions. It's been 6+ months since our first evaluation to this diagnosis with many appointments in between. How did you feel when you got the diagnosis for your child? Where do I go from here? I know nothing changes who he is, he's an amazing little boy. I love him so much.
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by on Feb. 1, 2013 at 2:22 AM
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ermasdaughter
by on Feb. 1, 2013 at 3:18 AM
1 mom liked this

That's great news!   Really, the therapies for these kids are really effective and chances are any issues he struggles with can be mitigated through theraputic behavioral strategies.  It will take time and the process gets confusing and messy sometimes but its all doable.  

My son was first diagnosed with PDD-NOS and then later rediagnosed with Aspergers.  

Kids like ours so  not techically considered a part of the autistic spectrum anymore - such is their ability to successfully manager their issues.  

I remember feeling the same way when my son was diagnosed until another mother, who is to this day a friend, said these same words to me.   

Our family is a living testament to the accuracy of  her advice.  My son is almost 6 and while he struggles with social situations he's doing fine.  Learning to live in the world he was born to.... it will be okay....

aimeegreen4ever
by on Feb. 1, 2013 at 6:22 AM
Thank you for your advise. I'm sure everything will work out and we'll get onto a manageable routine.

What kids are not on the Autism spectrum?


Quoting ermasdaughter:

That's great news!   Really, the therapies for these kids are really effective and chances are any issues he struggles with can be mitigated through theraputic behavioral strategies.  It will take time and the process gets confusing and messy sometimes but its all doable.  

My son was first diagnosed with PDD-NOS and then later rediagnosed with Aspergers.  

Kids like ours so  not techically considered a part of the autistic spectrum anymore - such is their ability to successfully manager their issues.  

I remember feeling the same way when my son was diagnosed until another mother, who is to this day a friend, said these same words to me.   

Our family is a living testament to the accuracy of  her advice.  My son is almost 6 and while he struggles with social situations he's doing fine.  Learning to live in the world he was born to.... it will be okay....


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JTMOM422
by Brenda on Feb. 1, 2013 at 9:23 AM
1 mom liked this

My ds was dx PDDNOS last July. I went through the same emotions plus guilt fear anger. They are all normal.

In the next couple months though his dx will change to Autism spectrum disorder. The spectrum criteria is about to change. No longer will PDDNOS exist. They will be ASD. They are also splitting up aspergers into 2 groups. Some will be ASD and the others a part of another dx. The changes were approved already. The new dx criteria takes effect in the next couple of months. 

dawncs
by Dawn on Feb. 1, 2013 at 10:12 AM
1 mom liked this

Congratulations on your recent diagnosis for your son! I know it is a difficult time dealing with the diagnosis. However, it will open up new opportunities and help for him through school because his diagnosis can help them know how to help him best. You need to update the school district and the school in writing about his new diagnosis, and you can learn more about Special Education services at http://www.wrightslaw.com/. You might also want to join a local support group besides spending time here, and you can locate them through Autism Society (http://www.autism-society.org/), Easter Seals (http://www.easterseals.org/), and Autism Speaks (http://www.autismspeaks.org/). You can find activities for him to do through Special Olympics (http://www.specialolympics.org/), TheARC (http://www.thearc.org/), and Variety Club (http://www.usvariety.org/).

Dawn
Beautifully Talanted Autistic Social Story Author
Diagnosed Asperger Syndrome as an adult
Diagnosed Edema (since young)
Author Page: http://www.toyboxunlimited.com/ (has discounts)

aimeegreen4ever
by on Feb. 1, 2013 at 11:28 AM
Will it automatically change our will we have to be re diagnosed? It took so much time getting this far. His Autism specialist said he won't need to be re evaluated until he's 5 but that she'd be seeing him every six months to make sure everything were doing is managing and helping him...


Quoting JTMOM422:

My ds was dx PDDNOS last July. I went through the same emotions plus guilt fear anger. They are all normal.

In the next couple months though his dx will change to Autism spectrum disorder. The spectrum criteria is about to change. No longer will PDDNOS exist. They will be ASD. They are also splitting up aspergers into 2 groups. Some will be ASD and the others a part of another dx. The changes were approved already. The new dx criteria takes effect in the next couple of months. 


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darbyakeep45
by Darby on Feb. 1, 2013 at 1:16 PM

My son was only 18 months old when he was diagnosed with Autism.  It was hard...we were in denial for a long time.  BUT that diagnosis has gotten him the therapy he needed and he's come a long way.  Hugs!

iamadramamomma
by on Feb. 1, 2013 at 6:44 PM
1 mom liked this

My 6 1/2 year old was just dx with adhd,sensory intergration disorder,asbergers and pdd-nos. I knew something wasen't right when he was 2 he didn't speak. I had him evaluated at 2 but he didn't qualify, at 3 he seemed ok but when he hit 4 I really saw a problem but they told me he was too young to be dx so he got EI for speech and ot.  Then kindergarden I was absolutley sure something was not right he still got speech,ot and reading help but he was throwing fits in class about every other day....now in first grade was it I would get letters home everyday about him...crying throwing himself on the floor, his episodes were horrible at home and in class he had to be pulled out of class alomst everyday due to that.

I took him to a child neurologist and he gave me the dx.....I was hysterical, blamed myself bc I have adhd and depression but in a big way I was releived to finally know and get a dx. It defintly is mixed feelings about this whole thing but now we can find a way to work with this and get him on the right meds and special needs for him in school.  

I was never in denial about my son I am just glad he is a healthy kid and I give him hugs and love all the time he is my angel boy my first born and I love him way too much if thats possible.....

Yes it is hard to deal with his meltdowns but I just have to go with it take a deep breath talk to others and pray.....I haven't seen any difference yet bc we just started the meds and he just changed schools 2 weeks ago....we have a long road ahead of us but now that I know what he has I know he will be just fine.

Good luck to all of us and god bless our little ones.

MomOfOneCoolKid
by Gold Member on Feb. 1, 2013 at 9:42 PM

i had already spent a whole yr reading about what to do, i was ready to start therapy.

For me, getting the therapy i wanted was not and has not been easy. i think b/c my son's issues are not as obvious. Getting him the RIGHT type of help has been hard.

MommaHubbard
by on Feb. 1, 2013 at 10:30 PM
3 moms liked this

Let me just say that it is wonderful that you have your diagnosis (I was told by everyone on here and at Liam's therapy center that usually is the hardest thing to obtain and takes forever!). It's even more wonderful that you have people trying to help you get strated with the therapy your child needs-that is so awesome! Great job Momma!!!


What I was told, (I work in a psychiatry medical school as an office asst) by everyone in my office and my son's diagnosing psychiatrist was that Asperger's and PDD will be put under Autism Spectrum Disorders (ASD). The manual they use to diagnose (DSM) has been updated and the update will go into effect in May. So, your child won't loose anything. It was explained to me that this was done in part because some states/insurances will not give your child services without an Autism diagnosis even though your child will still need therapy. So, they did this partly with the hope that more children will be able to get the therapy they need.


I can honestly say that one of the reasons that this was explained to me, was because in an attempt tobreak the diagnosis news to a parent the way they will be doing in 4 more months, I was told that my son has a mild case of autism. Now, I will admit that before this diagnosis, all I could think of when I heard the word autism was an extreme. So, I was freaking-out. I didn't know what it would mean for my son's future, if he could ever move-out, go to college, get a job, get married, have a life. It actually states in the doctor's notes I received from the day treatment program that I spent the entire conversation that day denying my son had any signs of the disorder. When my son was released, I didn't get anything else other than an appt with a new psychiatrist for Jan 21st when he was discharged from the day treatment program on Jan 4th. I was told to just google support groups since they didn't know of any on my side of town. I was terribly lost!


Then, after everyone assured me at the day treatmwent program and the psychiatrist I work for (he doesn't see peds) that Liam would still be able to have a normal life, that he would just need some additional help with some things, I was able to accept the diagnosis. I joined this group. Then, I also evaluated myself, since honestly my son (out of all 3 of my children) is the one that I most identify with and felt was the most like me. So, that came with other emotions-while I tried frantically to deal with the school (ZERO helpful), find a therapy center, insurance and crash-course in ASD. I went to every lecture on Autism for all the psychiatrists and medical student at our school. I have listened to researchers present their work. I have finally accepted that they really just don't know very much about ASD at this point (I get to go to a genetics related lecture on the 28th). But, I have come to realize that it doesn't really matter if I have/would've been diagnosed as a child with any form of ASD or that my son's ASD was caused by my genes and/or an environmental factor. What matters now is that my son gets the therapy he needs so that maybe someday he won't be on sooooo many medications.


This group was INSTRUMENTAL to my sanity this entire time and helped me figure-out everything, every step of the way! THANK YOU TO EVERYONE SOOOO MUCH!!!!


group hug

MommaHubbard
by on Feb. 1, 2013 at 10:38 PM

Btw, I want to clarify that I do NOT have evrything figured-out, this is still a learning process for me. I was referring to getting the insurance, therapy center and actually learning something about ASD worked-on.

embarrassed

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