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

diagnosis not what I expected

Posted by on Apr. 20, 2014 at 3:10 AM
  • 26 Replies

This might be kind of a vent, and a lot of questions. My son is 5, and as a part of Early Intervention they diagnosed him as Asperger's (Even though the term was not used any longer.) in January. These evaluators spent a few hours with him, in multiple settings and went by my own answers to questions. We finally got into the developmental pedi on Friday, and the doctor said he is only ADHD, with Emotional Lability. (even though he is 5, he is emotionally stunted at 2 years old.) She said because he is so smart, and can talk, he can not be HFA. (After I was lectured that Asperger's is no longer used...I only mentioned what the school psychologist diagnosed!) So now I don't know what to do. I love my son to death, and don't necessarily need a label of this, that or another. I just want to know he is going to get the services he needs. I know in our school district, the schools roll their eyes at ADHD since it is so prevelently diagnosed. And what is the difference between these two diagnoses, especially since it states he is emotionally and socially stunted, as the old Asperger's term did. I guess I don't understand right now. I'm trying too. She wouldn't let me explain why or even read the previous evaluations. She spent an hour with my son, and made her claim. She stated that she normally don't diagnose ADHD on a single visit, but because of how all over he was and how he couldn't understand personal space and didn't "allow time for eye contact", he had to be ADHD. Also, since he was defiant with the evaluator he had ODD, but didn't add that to her DX at this time. 

Anyone have experience with this? And question the diagnois? I know it is harder when you have a child that is in the higher functioning aspect of Autism. I understand that my son is super smart...too smart. He tested at a 2nd grade level of knowledge at 5! But his social and emotional was that of a 28 month old! Add to it, I was told to talk to him at his IQ level, but when he has his emotional meltdowns, to treat him like the 28 month old. So I'm just kind of confused. I guess this isn't necessarily Autism related, since he was moved out of his diagnosis..but now I'm just confused. 

by on Apr. 20, 2014 at 3:10 AM
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Replies (1-10):
TheJerseyGirl
by Michele on Apr. 20, 2014 at 8:10 AM
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 Hi!

My son at 3 was originally dx'ed wiht Aspergers (back then, they still used the dx) but then it was changed to Autism. His doctor told me the dx would benefit him much more in school and it has. It was the only way he got a 1:1 aide and I can;t imagine me sending him to school without knowing she is there!

With that said, he had been mainstreamed 80% until this year and it is now down to 40%. Middle school is like HS here and so , so hard to keep up with. He has ALWAYS been straight A honor roll with some modifications and he has always talked, so I have no idea where your doctor gets the analogy with autism and not speaking or being smart, because that isn't true. High functioning autism means many things to many people, but classic autism still walks and talks...lol.

If he has an IEP or 504 in school, he will still be able to receive services they provide but may not need something like speech, but still would benefit from ABA.


dawncs
by Dawn on Apr. 20, 2014 at 9:03 AM
2 moms liked this

 Have you thought of trying another doctor to diagnose your son? I recommend finding one through http://www.autismspeaks.org/ or your state chapter of http://www.autism-society.org/. I recommend reading http://www.wrightslaw.com/ and http://www.chadd.org/ in the mean time along with http://www.aspergersyndrome.org/.

MunchiesMom324
by Member on Apr. 20, 2014 at 9:44 AM
1 mom liked this

DS1 had a dx of PDD-NOS (which they also stopped using) for five years.  A couple of weeks ago, he had another eval (first was done at 5, he's 10 now) and his diagnosis is now "ADHD".  Is he emotionally delayed?  Yes.  "Quirky"?  Definitely.  The evaluator said that if he were slightly more quirky, he would be on the spectrum.  His scores were literally 1-2 points off.  

It's frustrating.  Now, the services he needed (OT, speech, self-contained classroom, and I was trying for an aide when he mainstreams) are not going to happen.  I'm lucky that the school has agreed to not share his new dx with the district, so that we can try to gently transition him into a normal schedule with the mainstream class.  

However, now that we don't have a spectrum dx, he can see MH for counseling.  We were told before that MH won't even let him in the door because of a spectrum dx.

KnittingMomC
by Member on Apr. 20, 2014 at 9:57 AM
1 mom liked this

One of my good friends whose son goes to our school has had a change in diagnosis over this last year.  He was first diagnosed with Autism at 3, but now his profile fits more of ADHD.  Both profiles are so similar. 

Macphee
by Silver Member on Apr. 20, 2014 at 10:54 AM
2 moms liked this
As long as he has an iep or 504, he should still get the services.
It is confusing. I would see another doctor and just get him diagnosed on the autism spectrum. Don't worry about them seeing him as smart or not. The point is to get the diagnosis to get services. My son was diagnosed with PDD Nos in 2010. Now he is autism spectrum disorder and language impaired. It doesn't explain how intelligent he is or his sense of humor.
solen
by VintageMom on Apr. 20, 2014 at 11:57 AM
1 mom liked this

My son was diagnosed @ 4 as " ADHD, NoWAY autistic.  He is too friendly" well yea, one on one with a lady pscholgist and her puppy! She never observed him in a setting with peers.  She was VERY wrong and he IS on the autism spectrum, no doubt.  Went and got him tested by school district and dr specializing in autism.

the difference between ADHD and high functioning autism can be a bit blurry, esp at 5.  But now that my son is twelve and goes to a private school w kids w ADHD and kids with high functioning autism, the difference is very apparent to me.  Yes there are crossover behaviors, but there are also some distinct differences.  You can always get another opinion, one doctor thought because my son could tell him the wall was yellow that he couldn't possibly have autism and it was really over diagnosed! Really, because a five year old knows his colors? Sadly this idiot still has a large thriving practice!

so go with your gut and seek out other points of view if you think the doctor is not correct. There are lots of experts out there that really don't have a clue. ( that said, others really " get it")

emarin77
by Silver Member on Apr. 20, 2014 at 1:13 PM

I would have him by a specialist doc or child psychologist of Autism and see if you can get another diagnosis.

Momof4AEMW
by Gold Member on Apr. 20, 2014 at 7:39 PM
2 moms liked this

I can't tell you what he has, but feel your frustration in getting multiple opinions.  In general, I place more value on the 'medical' opinion and diagnosis than the school as they are independent of the school.  However, this doc seemed to be very dismissive to you, rushed, kind of rude.  I don't like that.  Honestly, I would get a 2nd opinion at a developmental pediatrician, developmental psych, or neuro psych.  Sorry Mama!!  Hugs! 

darbyakeep45
by Darby on Apr. 20, 2014 at 8:16 PM
1 mom liked this

I agree here...I'm more about the medical diagnosis instead of school ones.  Hugs!

Quoting Momof4AEMW:

I can't tell you what he has, but feel your frustration in getting multiple opinions.  In general, I place more value on the 'medical' opinion and diagnosis than the school as they are independent of the school.  However, this doc seemed to be very dismissive to you, rushed, kind of rude.  I don't like that.  Honestly, I would get a 2nd opinion at a developmental pediatrician, developmental psych, or neuro psych.  Sorry Mama!!  Hugs! 


Ricksmama
by Member on Apr. 20, 2014 at 8:29 PM
1 mom liked this
Okay here is what I call the 5s's in dealing with special needs
1-share-continue to share your story
2-shout-this is where you vent an let it all out
3-surrender-this is where it's okay to let yourself realize it's bigger than you
4-sit-this is when you sit alone an cry it's okay
5-stand-this is where you stand back up and kick ass you have to realize your the biggest advocate for your child
Hi I want you to know your not alone so follow the above and then become a warrior if you feel this isn't the correct diagnosis then keep looking. We are in this together. Hugs mama
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