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Where to seek diagnosis of PDD in a young adult?


Catherine
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I have an 18 yo, nearly 19, who is a high school graduate.  He is working at a job right now with a tentative plan to start college locally, commuting, in the spring.  He is the middle of three boys.  

 

He has had mental health issues since the onset of puberty, including major depression, and his therapist right now has mentioned a concern that he may be developing psychosis, based on ds's expression of a bizarre idea, social difficulties, and academic struggling\failure, serious executive functioning problems etc.  But his earlier childhood had a few blips too.  Tantrums, shutting down sometimes when he felt overwhelmed, brittle temper, extreme food avoidance issues (these continue to the present).  IOW if he is psychotic, it started when he was a baby.  

 

Since this child has seemed to have some challenges since early childhood, I am wondering if he actually has (very) high functioning autism.  What makes me think this:  inflexibility, the above-noted issues, just a few incidences of out of control tantrums during his childhood (only maybe a dozen times, but each one was huge and lasted many hours).  He has a tendency to "shut down" when he feels overwhelmed.  At 16, when his grandfather died, he put up a folding tent he played with when he was little and laid down in it.  Probably for 30-60 minutes.  Do you see what I mean?  Not exactly obviously PDD, but...odd.

 

Who would help us to figure this out for a kid who is almost 19?  I'm waiting for a call back from the pediatrician.  He already has a general psychiatrist who has treated his depression, a weekly general therapist, who has been wonderful and very helpful, and he had a battery of neuro-psych testing about 18 months ago.  At my specific request, she added one test, the GADS, and concluded based on it that ds is not autistic.   

 

Editing to include why we would even seek a diagnosis: ds is very bright based on just knowing him and his testing results, but despite that, he did poorly in high school and even failed some classes.  Major social difficulties that contributed to his developing major depression.  Depression improving now but he still has minimal social contact.  I am researching programs to help struggling young adults and am realizing that many of them require a diagnosis.  Since he hasn't flopped in college yet, we will probably proceed with starting in the spring, IF he wants to (this is not yet clear), but I am honestly not able to picture him succeeding in college.  Planning ahead.  I suspect he will end up in one of these programs.  

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Since you mention food avoidances I would consider looking more closely at these. Not always, but sometimes food intolerances can aggravate symptoms and even cause them. Yeast overgrowth from a round of antibiotics early in life can cause MAJOR depression, a raw nervous system, and the food intolerances themselves, while adding further complication. I love the book Gut and Psychology syndrome by Dr. Campbell-McBride and Dianne Craft Biology of Behavior. I'm not saying it may not have a psychological basis but sometimes ruling out some of the potential offenders can help you narrow down the causes. 

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Contact local or state autism groups. Actually, I can google my state name and autism diagnosis and I get several hits. You would call the people you find and ask if they are comfortable assessing person of his age, who would be high functioning, for possible autism. It does sound like something to rule in or out, given the social issues.

 

Is autism the only diagnosis that would get him in in the adult support programs? Have you talked to your state disability people to see what is actually required?

While you wait will he be willing to work on executive function, social issues, etc. with you?

 

Did the testing she did pick up learning disabilities or adhd (inattentive for example) type stuff?

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Contact local or state autism groups. Actually, I can google my state name and autism diagnosis and I get several hits. You would call the people you find and ask if they are comfortable assessing person of his age, who would be high functioning, for possible autism. It does sound like something to rule in or out, given the social issues.

 

Is autism the only diagnosis that would get him in in the adult support programs? Have you talked to your state disability people to see what is actually required?

While you wait will he be willing to work on executive function, social issues, etc. with you?

 

Did the testing she did pick up learning disabilities or adhd (inattentive for example) type stuff?

The testing revealed large discrepancies (99th percentile down to 5th percentile), which apparently often occurs in people with ADD.  The neuropsychologist and his psychiatrist insist he has ADD, based on major difficulty with executive functioning. Meds failed immediately based on side effects, and I have not pursued further because I honestly don't think he is *inattentive*-he just can't function, if that makes any sense.  Testing also showed very slow processing-and he IS very, very slow.  

 

I think he would work on some issues with me...can you recommend how to do this?  I give him prompts and reminders, which he often, but not always, follows, but it doesn't seem like he absorbs and incorporates habits I am trying to engender.  Is there any book or program or anything at all to coach ME on coaching him?  And particularly, any guidance on "removing the scaffolding"?  

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The testing revealed large discrepancies (99th percentile down to 5th percentile), which apparently often occurs in people with ADD.  The neuropsychologist and his psychiatrist insist he has ADD, based on major difficulty with executive functioning. Meds failed immediately based on side effects, and I have not pursued further because I honestly don't think he is *inattentive*-he just can't function, if that makes any sense.  Testing also showed very slow processing-and he IS very, very slow.  

 

I think he would work on some issues with me...can you recommend how to do this?  I give him prompts and reminders, which he often, but not always, follows, but it doesn't seem like he absorbs and incorporates habits I am trying to engender.  Is there any book or program or anything at all to coach ME on coaching him?  And particularly, any guidance on "removing the scaffolding"?  

 

 

Did they did down into the slow processing? I understand there are tests that can show what is a motor issue and what is attention. 

 

I don't think that having a full autism workup would be a bad thing at all. There are people who get heavy duty psych diagnosis only to find out that they actually have autism. (According to articles I've read, blog testimonies, etc.). This link is from the article on girls and autism, but it sounds similar in some ways to your son. Not the exact profile, but some of the perceptions of him broadly. http://spectrumnews.org/features/deep-dive/the-lost-girls/  I think it's very reasonable to look for other causes before jumping to psychosis. 

 

How close was he on the GADS? Did you make any observations or qualifications along with your answers? I am trying to remember if we felt like GADS was a helpful test. I know it's one that we filled out, but it was not the only one. I'm thinking GADS raised a lot of flags, but the questions were difficult to interpret.

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I think he would work on some issues with me...can you recommend how to do this?  I give him prompts and reminders, which he often, but not always, follows, but it doesn't seem like he absorbs and incorporates habits I am trying to engender.  Is there any book or program or anything at all to coach ME on coaching him?  And particularly, any guidance on "removing the scaffolding"?  

 

My son with processing in this range (oddly enough, not the kiddo with autism), takes forever to learn anything habit-wise. I would do visual schedules (doesn't have to literally be pictures), checklists, diagrams, etc. I would put things where they belong, and then photograph them put away. You can make a book of the pictures, or you could keep the pictures tacked near what they are showing (even on the inside of a cupboard door, if necessary). You will have to start with one area at a time and branch out. It's exhausting, honestly. My son would lose body parts if they weren't attached. You could literally follow him around all day and pick up stuff that he absentmindedly puts down. He just can't do two things at once, ever. BTW, he also has CAPD and other quirks (waiting on the reports), and those things all come together to gum up the processing. 

 

Maybe the Smart But Scattered book for teens? Late, Lost, Unprepared?

 

You might have to back up a lot more than you expected and scaffold longer. 

 

It sounds like you are doing a good job considering that you don't feel as though you have all the information you need. Hang in there!

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I mentioned the possible nutritional aspect because this was our experience with ds 2. He was a screamer as a little guy and was always unhappy until we cleared his yeast overgrowth problem. Ds 1 has the autism but he was also diagnosed with a dairy intolerance. He has become less symptomatic (autistic-wise) since eliminating it, but obviously he is still autistic. Your ds  sounds very like my autistic son. He has a high verbal IQ but also a has processing speed in the 1st percentile with a 2nd percentile working memory (impaired ranges). Our neuropsych recommended cognitive rehab which is done by a SLP. She said it was all rolled into the autism diagnosis. The social awkwardness combined with the splintered skills can sometimes be a big indicator. I agree with kbutton. It would not be a bad idea to have the full workup.

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 The neuropsychologist and his psychiatrist insist he has ADD, based on major difficulty with executive functioning.

 

It is very common for autistics to receive a misdiagnosis of ADD or ADHD. It is also possible for the same individual to have both conditions - possible, and very common. The same genes that are linked to ADD are also linked to autism, and atypical neurological traits tend to clump together. (It is also fairly common for autistics to be prone to depression. I don't know if people with ADD/ADHD but not autism have this comorbidity.)

 

Finally, as you probably know, it is extremely common for autistics to have major difficulty with executive functioning.

 

If his current diagnosis is not giving him the help he needs, then I think you're right to seek out a new, more accurate diagnosis. What you describe certainly sounds like it could be autism to me. *hugs*

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In a way you're splitting hairs, because ADHD with social delay and ASD are treated the same way as far as the social.  You can go to www.socialthinking.com use the selector by age and see what products they recommend.  Moving over to the ASD label opens doors.  This is a nebulous area and people are moving back and forth on it.  I see this in talking with people online.  

 

If he needs a more careful examination of the ASD question to get access to services, then call a clinic that specializes in ASD.  In our state a major university has a clinic, and when they don't treat a certain age group they usually have good referrals.  A psych can spend 6+ hours looking just at the ASD question.  This does not have to stop with the Gilliam.  (Notice how many unsavory words I redacted from that sentence?)  

 

Either way you have to intervene on the social, because clearly he's struggling.  It's just a matter of funding and getting access to the services and materials.  If you are in a position to help the dc (parent, tutor, whatever), then you can go to SocialThinking.com and order things yourself.  If you want someone to do the materials with him (probably a better choice, frankly), then look for someone with that training.  That will typically be an SLP, OT, or behaviorist.  

 

It also sounds like he would benefit from an educational therapist.  They provide coaching for EF issues.  Severe EF issues as flagged on the BRIEF (an EF survey) are DIRECTLY correlated with probability of ASD.  It is not your imagination that these things are going on.  I would definitely intervene.  It's more just a question of whether you need the label to get access to services.  They will treat him without the added label, if you have the funding.

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Thank you so much for all of the thoughtful and detailed responses.  I'll answer questions all at once.  Autism is not the only diagnosis that will qualify him for the program that IMO he would benefit most from, which focuses on young adults who are planning college or proceeding into the work force.  the training is tailored to their self-chosen goals.  My dh strongly believes that more diagnosis will be pricey and not probably get us much new info, and I am beginning to come around to that view, IF we can get him the help without having that info.  I wonder if our insurance will help to pay for anything if he has the Asperger's diagnosis. 

 

The testing did not get into the cause of his slow processing.  When his father asked him why the one-digit addition took him so long he said that he stopped to check each one twice to make sure the answer was right.  This was when he was 17 1\2 and had been instructed that how fast he worked did matter in that test.  kbutton, the article you linked is very helpful! Amazing how many inaccurate labels can land on someone who is struggling, seeking answers, and spends 30 minutes (or less!) with a professional who then draws a big conclusion that is only based on a part of the picture.  

 

His GADS scores were based on questionnaires his father and I completed.  Under 69 is not probable, according to the key and my score was 42, his was 53.  She also did the Social Responsiveness Scale and his total scores were 51 and 49, scores 60 and above abnormal.  We also did a Behavioral Assessment System for Children and one of his teachers filled it out too.  The teacher's assessment was worse than ours, many scores in the abnormal range, including hyperactivity, conduct problems, anxiety, depression, attention problems, atypicality (that was highest-81), withdrawal, and study skills.  The parent scores for that scale that were abnormal were depression, atypicality, withdrawal, social skills, and leadership.  All of this fits perfectly with what I see day to day.  

 

Yes, I am seeing that we will need to really get down to the nuts and bolts if we are going to teach\coach him here at home. There is an extremely expensive year long residential program that sounds good, on paper, but if we do it, we'd probably want to start in the fall, so that gives us several months to work on stuff here.  

 

How exactly do I introduce this kind of topic?  I strongly suspect he will not be very receptive at first, because he is just generally inflexible about pretty much everything.  Do I just tell him I think he has Aspergers?  

 

The social thinking site looks very helpful OhElizabeth!!  Thank you!  I totally agree that he will probably accept guidance from someone else more easily than he will from me.  I will start looking for someone.

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