Diagnosis — The Bump
Special Needs

Diagnosis

Today was Charlie's appointment for the ADOS and he was diagnosed with Autism. The psychologist didn't elaborate as to a type/form, but I'm assuming that's a reflection of the new DSM categorization? She said he has a really, really hard time interacting with others and requesting things he needs - almost all of their interactions needed to be prompted heavily. She said that she believes he's very intelligent, but can't process it and get it out, which is what it's always felt like to us when we interact with him. We are heartbroken, yet surprisingly relieved; we can finish worrying and wondering and start doing and helping. The thought has been at the back of our minds for almost 2 years now and its comforting to know we have a direction. 

Once the new year hits and everyone gets back to normal work schedules, we'll be building his IEP and scheduling his therapies. The psychologist also strongly suggested we seek out a cognitive behavioral therapist to see him regarding his anxiety and how it relates. Thankfully, we'll be able to apply for state ACCESS to help expand what is available to us. 

In the meantime, we're just reminding ourselves that nothing has actually changed - we just have more information.

Thank you to those who have given words of kindness and wisdom as we've gotten this ball rolling. I truly believe the motivation and direction I got from this board is what helped us get from formal request to diagnosis in under 2 months. This board is something incredibly special. <3
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Ginny DX 21-Hydroxylase Deficiency Congenital Adrenal Hyperplasia

Charlie DX Specific Antibody Deficiency & ASD

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Re: Diagnosis

  • Hugs.
    WAY 2 Cool 4 School


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  • Big hugs! Even though you were expecting it, allow yourself to grieve. It is definitely a process. 


    DS1: 4/15/2011
    Dx: ASD, SPD and receptive and expressive speech delay at 21 months
    BFP #2: CP 5/2012
    DS2: 4/24/2013
    BFP #4: Miscarriage at 5 weeks 7/2014
    BFP #5: 8/8/2014 Due 4/20/2015 
    Its a healthy girl!!!!! 
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  • Hugs. Glad you have some answers and good luck with getting everything started up!
    DS 10/2012
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  • -auntie- said:
    Today was Charlie's appointment for the ADOS and he was diagnosed with Autism. The psychologist didn't elaborate as to a type/form, but I'm assuming that's a reflection of the new DSM categorization? 

    The current DSM offers only ASD as a dx. It does have available qualifiers to rate severity in terms of presentation- degrees of impairment and atypicality. It can be very hard to quantify this in a younger child because the bar for adaptive living skills is so very low- not much is expected of a preschooler. 

    I forget, was this a school district educational eval or a private one with a dev pedi?

    That's what I figured. My husband worked in a behavior support classroom as a teaching aid a few years ago and I remember him telling me about the change in the DSM and how it was the buzz amongst the teachers. Charlie eval was through the CAIU. 

    She said he has a really, really hard time interacting with others and requesting things he needs - almost all of their interactions needed to be prompted heavily. She said that she believes he's very intelligent, but can't process it and get it out, which is what it's always felt like to us when we interact with him. 

    The intelligence part is good, it'll free you up to work more heavily of the social and behavioral pieces. 

    We are heartbroken, yet surprisingly relieved; we can finish worrying and wondering and start doing and helping. The thought has been at the back of our minds for almost 2 years now and its comforting to know we have a direction. 

    Validation can be a very bittersweet thing. Knowledge will help you make a plan to help your DS be his best self.

    Once the new year hits and everyone gets back to normal work schedules, we'll be building his IEP and scheduling his therapies. The psychologist also strongly suggested we seek out a cognitive behavioral therapist to see him regarding his anxiety and how it relates. Thankfully, we'll be able to apply for state ACCESS to help expand what is available to us. 

    Is this non-means tested Medicaid or a Katie Becket Waiver? 

    I'm honestly not sure - I haven't sat down and looked at it all just yet. When we first moved here, Charlie was on CHIP because my insurance didn't kick in for 6 months and it was wonderful. He had amazing coverage. I don't know if Medicaid is the same or similar, but in the packet there is an exemption area for this kind of diagnosis. Right now we have an HMO, which is good in coverage, but limited in area. 

    You mentioned getting a psychologist to do CBT at some point; it can be difficult to find clinicians who accept Medicaid. DS had a Katie Becket when he was first dxd- it brought nothing to our party. We couldn't find people with the expertise we needed who would accept this. Hopefully YMMV, but in some places they won't do CBT on kids this young.

    I was wondering about this. She seemed pretty concerned with his anxiety and insinuated that figuring that out was a key to helping the other therapies along. I'm hoping to get more information about this when we talk more in January. 

    DS did CBT form about age 7- it was awesome. He is quite bright and his language skills were failry advanced aside from some pragmatics glitches.

    I'm glad it's helpful! I'm eager to get all of this started. I feel so helpless right now -- even though he is absolutely fine, happy, and has no idea that we're worried. :)




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    "I wanted you more than you'll ever know, so I sent love to follow wherever you go."

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    image Follow Me on Pinterest

    Ginny DX 21-Hydroxylase Deficiency Congenital Adrenal Hyperplasia

    Charlie DX Specific Antibody Deficiency & ASD

  • abigail912abigail912 member
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    edited December 2014
    Glad you have answers.  DS's ADOS was this past April.  Having the results were relieving and heartbreaking.  Hopefully it will be a smooth process getting all the services in place for him.
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