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Son Meets Criteria for Autism but Physican wont give a ASD Diagnosis

(16 Posts)
des09100 Thu 15-Jan-15 16:52:29

My son is 8 years old and in second grade.

Since preschool I noticed my son just wasn't maturing the way other children were. He had behavioral issues, social and emotional development delays. He preferred to be alone, any noise above inside voices would cause him to run away, curl up in to a ball, put his hands over his ears and rock back and fourth. He would growl at kids trying to talk to him, a couple of instances bit other children. He almost got kicked out of preschool. This concerned the preschool and I enough to decide to get him evaluated by EEE. They came and observed my son for a couple of hours, he of course was on his best behavior. We got a report back that he was talking in sentences, able to stack a certain number of blocks, recognize his name, ect. to sum it up they said they found no reason to complete any further testing. A year goes by and everything is still going on so we call again and the same thing happens, they came for a couple of hours, wrote a report that other testing couldn't be justified.

Kindergarten roles around and I begin to get daily calls, my son won't participate in activities, he will only sit in one chair, he is constantly running away, growling at kids, when he is spoken to his covers his eyes. Since his grades were excellent, they chalked that up to his age, that he would grow out of it.

First grade roles around and the phone calls start all over again his aggression getting worse, pinching other kids that go near him, hiding in a cubby banging his head over and over but his grades are good. He was reading at second grade level, he could spell words but not write them. Half a year goes by and the school asks me if I would consent to a evaluation. I let them know my hesitation because I did this song and dance before to just be told he was a healthy, smart child that he would grow out of it. Because of my sons grades were excellent the school almost had to deny us again but they were able to classify my son under the Behavioral Disturbance classification. We finally get a completed evaluation. He was a perfect for all the test. The results came back they ruled out depression, add, adhd, odd, ect. he did have mild anxiety which I already knew. It was noted that there was suspicion my son was on the Autism Spectrum. I was shocked it never crossed my mind once that my son could have Autism. The evaluator was not qualified to make such a diagnosis. We received a referral to our local Autism Assessment Clinic. By this time though the school year ended.

Second grade roles around and we get the Autism Assessment appointment set for December 2014. FINALLY. It was a two day, all day assessment, my son had to see three different doctors back to back. I filled out all the paperwork and spoke with one of the doctors for a little over an hour. Of course my son was a perfect gentlemen.

We just got our results and I am confused and not sure what to think really. The report starts off with family history, concerns, portions of my sons IEP. 12 pages later we finally get to the clinical interview. They start off explaining the ADI-R (89 Questions cover three areas of impairment in Autism) Diagnostic Cut off for Reciprocal Social Interaction is 10. My son scored 13. Abnormalities in Communication cut off is 8 my son scored a 4. Stereotype Patterns of Behavior Cut off 3 my son scored a 2.

So he rates positive for Autism under the Social Interaction and almost for Stereotype Patterns of Behavior.

Then they go on explaining the SRS-2 screening tool for diagnosis of autism.
My sons T-Score from myself was averaged at 88, his father a 85
The report says "T-score of 76 or higher is strongly associated with a clinical diagnosis of Autistic Disorder, Aspergers Disorder, or severe PDD-Nos"

They administered a Social-Communication Questionnaire. SCQ score range from 0-40 (higher the score to higher levels of ASD symptoms) recommended clinical cut off is 15. My son scored a 24.

There were Child Behavior Checklists that myself, his dad, his teacher and his para educator filled out to assess his social, emotional, and behavioral functioning. There are three classifications Normal, Borderline, and Clinical. All scores even from the teachers showed my son in the Clinical range.

A Brief Negativity scale shows that my son has a severe dysfunction.

Half way through the document after all these test it says "Conclusion: (in bold letters) My sons name met criteria for autism based solely in this assessment."

So you would assume that the rest of the documents would be the same. NOPE.
It goes on to say "However, while realizing (my sons name here) social awkwardness, behavioral idiosyncrasies (observed band evidenced by the elevated score on the SCQ, SRS, ADI, and ADOS), it not entirely definitive, even with the use of gold standard instruments, that (sons name here an autism spectrum disorder." Okay can grasp that you can not be absolutely sure.

But then it goes to say " In spite of his reported historical deficits, although strikingly variable and somewhat peculiar, once comfortable, we found (sons name here) is able to demonstrate an ability to engage socially with the examiner. We realize (sons name) is not a diagnostically unambiguous boy and although its appealing to use an ASD label to make sense of his idiosyncratic and variable manner along with his social shortfalls, we found him to be relationally-driven and the data do not wholly support this conclusion. Our clinical impression is the (sons name) does not (word is underlined in bold) have an autism spectrum disorder."

"we conclude that (sons name) has NOS-Anxiety, ADHD and Executive Dysfunction Disorder."

Remember his first evaluator diagnoses him with milt anxiety and ruled out all other diagnosis.

The Autism Assessment Clinic is basing there opinions on the fact that my son was able to hold a conversation with the examiner, play one-on-one in imaginary play, used item symbolically and the fact he can imitate others. What they didn't factor in is they are adults, exchange the adult for a child they would have seen a completely different child. I don't know why he prefers adults he just does.

That is what I have to digest. All of there gold standard test points to a ASD, filled out by his parent and his school. People who spend everyday with him. All three doctors combined might have spent a total of 3 hours with my son.

My son has the following symptoms:
He has difficulty interacting with other kids, doesn’t make friends easy, has problems initiation conversation or maintaining it with other kids. He prefers adult conversations.

He has odd behaviors, he squints his face when he says things for example at home he will ask me a question when I answer it he will smile and make this nnnnning noise in response to being happy, he flick his fingers, picks his skin, ect.

He doesn’t make eye contact when talking with people, he doesn’t understand body language or facial expressions, when I am upset or sad he doesn’t recognize that I am.

When he does something and gets into trouble and you ask him why your in time out. He will say because I hit this person, no remorse at all, he will say he knows it is wrong but only because I said it was. If he thinks loses games for inappropriate behavior his will cry and apologize not because he feels bad but because he lost something.

He is very literal when he talks, straight to the point.

He has very limited interest that are obsessive, he's obsessive over the army, videogames.

He is very clumsy awkward.

Ethan is an exceptionally good reader.

He uses big words that kids don’t use. Other kids would say mommy says not to do that Ethan will say that “Irresponsible behavior”. He says he likes talking to adults because they can understand what he is saying.

He prefers big words.

He hates writing because it is hard for him. He doesn't have the motor skill to do it properly.

Noises louder then indoor voices bother him, he needs to wear headphones or ear plugs while in the class room, he will only wear jeans if they have fleece inside them. Bright lights or the sun bother him. Even smells can trigger him.

What should I do? Should I dispute it? They are specialist in this area so is the diagnoses correct? Should I accept it and move on? Should I get a second opinion. I am lost really lost. I want the best for my child and my gut tells me this diagnoses is wrong but what if its me worrying to much?

ANY Insight, Advice, Thought would be helpful and appreciated.

I apologize in advance for any spelling or grammatical errors this is a very long post and I had a lot to say.

Rillibee Fri 16-Jan-15 04:20:40

"He hates writing because it is hard for him. He doesn't have the motor skill to do it properly."

I can't comment on the rest of your story (though I have so much sympathy for what you're dealing with) but I have had experience with handwriting issues. My son, who is 19, has similar problems with writing and clumsiness and was finally diagnosed with Developmental Coordination Disorder at 14, at which age he wouldn't cooperate with the management plan because it wasn't 'cool'. He still avoids handwriting and it definitely had a negative impact on his schooling.

Don't let it slide. Get your son to a children's occupational therapist if you can to get an assessment and some strategies in place.

funnyperson Fri 16-Jan-15 04:29:50

what a complicsted report. what were the recommendations for action?

Alibalibumblebee Fri 16-Jan-15 04:50:03

Children can have a lot of the ASD characteristics but not actually be Autistic.

This kind of explains it.

www.psychiatry.emory.edu/PROGRAMS/autism/pdd.html

There is also Semi-Pragmatic Disorder.

Please dont think Im suggesting that your son could be diagnosed with either of these two disorders because Im not. Im just trying to illustrate how other things can mimic autism.

CastlesInTheSand Fri 16-Jan-15 05:06:28

Are you in the US?

Here in the UK a diagnosis of autism brings nothing with it. So I would assume your DS has Autism. Tell school he has. Research it yourself to learn more.

And I wouldn't worry about having an official diagnosis because it won't help you or him anymore than not having one.

You know what his problems are now. Now it's up to you to find out if there is anything you can do to help him.

des09100 Fri 16-Jan-15 15:03:12

Rillibee thank you so much for your reply. My son currently has a occupational therapist that he seeing 1-3x per a week.

I cant imagine waiting until my son was 14 to finally get answers.

des09100 Fri 16-Jan-15 15:22:42

Funny Person - The recommend (words taken directly from document):
1. Physiological Intervention at home and school, Cognitively-Behavioral informed interventions - The school and I already have this in place and have since the start.
2.Avoiding environmental contributions, finding more successful ways in managing his behavior. - The school and I already do this as well, the problem with avoiding environmental contributions is my son would never be able to step into a classroom because that is a environmental contribution. We have also tried so many techniques to manage his behavior. They will work for a little bit and then just stop working.
3.Psychopharmacological interventions is strongly recommended in this case - They started him on 1 Clonidine 0.1mg just before bedtime this week. We are seeing how this goes.
4. Continue his IEP
5. Continue occupational therapy
6. Work with a speech-language pathologist to address over articulation.
7. Participate in peer social interaction in structured supervised activities - we also already do this, once a week we go to our local library where they have a Minecraft group play and discussion, we do boy scouts once a week. We go even if he doesn't participate.

The only things the school and I didn't implement before was the medication portion because we wanted to complete all the testing first.

des09100 Fri 16-Jan-15 15:27:06

Alibalibumblebee - Thank you for that link. It was discussed that my son did cross multiple diagnostic boundaries. If the school didn't feel that the diagnoses was incorrect I probably would accept the assessment for face value.

des09100 Fri 16-Jan-15 15:34:13

CastlesInTheSand - I am in the US. Thank you, you are right the official diagnoses isn't what matter most. We are chipping away at the symptoms one by one.

Where I live if my son has Autism there is as school that he would qualify fore that adapts specifically to the student. The IEP in public school helps but because of the rules and regulations of the school the teachers and his therapist are limited on how they can handle my child.

One problem I have run into in doing research and inquiring about it with the doctors is they often just flat out say they no to any treatment I bring up.

fairgame Fri 16-Jan-15 15:47:36

From what you have put it looks like they have decided that your son doesn't meet the ASD criteria in ALL 3 areas that they have assessed. You have to have difficulties in all 3 areas for a diagnosis.
As he was so close/borderline to meeting the criteria in the other areas, i would ask for a second opinion, especially as it means you have lost out on a school place. My son is in an ASD specialist school and it has made a huge difference to him so its worth pushing for a second opinion so he doesn't miss out if he has got ASD.
There are also some children who have lots of ASD traits but just sit under the diagnostic cut off for ASD, he may be one of those children.

des09100 Fri 16-Jan-15 17:17:51

fairgame - thank you, the school and I met yesterday afternoon and we decided to read the report together because the Special Education teacher thought that might be the reason he didn't meet the criteria. However, after reading the report the school admitted they were confused because the report clearly stated he met criteria to all three areas.

The school requested all drafts of the decision because we only had the final. The drafts were faxed out this morning and the school forwarded them to me. In the first draft it noted that two out of the three doctors opinions were that my son had ASD, one leaned towards high functioning the other thought Asperger's. The third doctor which was the lead doctor disagreed with both opinions. The lead doctors gets the final say.

I am looking into getting a second opinion at a different facility.

funnyperson Fri 16-Jan-15 20:39:05

tricky with a very long report.
sometimes less is more.
if the core international diagnostic criteria weren't fulfilled they weren't fulfilled.
the criteria changed in april last year.
also young people change.
maybe that's why its all a bit unclear even with a very detailed assessment.
the recommendations are the thing.

Heyho111 Fri 16-Jan-15 23:50:59

To get a diagnosis of ASD you need to have a significant difficulty in each of the following 3 areas. Language, social communication and imagination. If you can't prove a significant difficulty in each area you can't get a diagnosis.
Other difficulties can also present as ASD. You can also have a social communication difficulty which isn't ASD. They have diagnosed him with a difficulty just not ASD. The tests you mentioned are very reliable so you need to take them as right. I hope he is getting therapy etc to help improve his difficulty.

adrianna22 Sat 17-Jan-15 12:25:17

Wow! That's a very complicated result.

Also, my DS didn't meet the full criteria of ASD, but still has a diagnosis. You do get some kids that only score 2/3 in regards to the triad of impairments but still get an ASD diagnosis.

OP- have you tried posting on the special needs:children's board?

fairgame Sat 17-Jan-15 17:21:47

How can it be ASD if they don't have difficulties in all 3 areas? That is the criteria for diagnosis!

Alibalibumblebee Sat 17-Jan-15 18:09:22

I look upon the triad of impairments as a triangle with each side of the triangle measuring 1 to 10. Some may measure 6/10 on one of the sides where as someone else may measure 1/10 on the same side.

With some children one side of the triad may be more obvious than the other and its only later on in life that the less obvious side becomes noticeable. Some diagnosticians may just know the child is on the spectrum even though their full range of difficulties isn't apparent at the time of testing.

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