Expert: James Michael Roan - 1/29/2007

Question
I would really love to know what a true and good evaluation would look like.
We went to a childrens hosptital in Pittsburgh but all they told us was she is to young and gave her a diagnosis of Disruptive Behavior Disorder. Which I say is just down right wrong. This diagnosis did inable us to get a wrap around consult and another evaluation from a child psychologist who is the one that did the tests. He gave her a diagnosis of Disruptive behaviot disorder and on her axis a rule-out of ASDHD combined type and rule-out of PDD,NOS from what they did say at the meeting to go over the report, wrap around told me that he wanted to try to wait and see with the rule-out diagnosis to see if that is actully her diagnosis or not. We were told she would be reevaluated in a year which seems like to long of a wait and see approach. Her school district will be doing a eval sometime before the new year since she is in Early Intervention now.
I so thank you for the help and time you have given me. I was starting to think I was just an over worrying mother who didnt know what she was talking about. That is how all these examiners keep making me feel. Thank you once again.
Lisa
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The text above is a follow-up to ...

-----Question-----
We have been given the complete run around when trying to get my daughter diagnoses. I will try to make sure I tell you all that is going on with her.
A little background info she has 4 half sibling with the same dad all that are diagnosed somewhere on the Autism scale from severe Autism and MR to PDD,NOS. All the other mothers have children to other men that are all NT.
At 6 mos old we wondered why my daughter seemed so different. She cried and cried and cried nothing could console her. Then she started throwing herself backward and not seeming to care if she smashed her head off of something (wouldnt cry with pain) she has a speech delay which is slowly getting better with Early Intervention she can label things and talk somewhat but only when she wants and its usually to the tv or she is repeating what the the character on the tv is saying and then will use these words in her day. She cant really tell you what she wants or needs, she will try sometimes but she will something like cheese and when you give her cheese that is not what she wanted. She still doesnt sleep through the night and still requires a bottle to go to sleep. She has extreme difficulty switching from one setting to another. It usually ends in a big temper tantrum. she still cant answer question like whats your name how old are you. she really doesnt answer any question if you ask her what she wants she will ususally say want (because its the last word you said) She has an extremely low frustration level. when playing she primarily is still manipulating and exploring them. she shows no toy preference at all. she has sensory issues dealing with clothing no tags wont wear certain fabrics and would prefer to not have them on at all. at every chance she will take clothes off and get very upset when you put them back on. She also will totally freak out when she gets the slightest bit of liquid and it that piece of clothing must come off NOW will tug and pull and get all worked up with having a drop of liquid on her. She also has problems with having her hair washed and brushed. Has extreme meltdowns when having either done. She has no evidence of being ready to be toilet trained, still doesnt notice she is soaked or has had a bowel movement, and she is also scared to death to sit on a potty or a big toilet with a potty seat attached. We tried putting underware on her but she totally flipped out and tore them off of her. She prefers to sit on our couch with her fleece fringed blanket and rub the fringe against the side of her nose for more than half the day. When she does play it is usually to make these master pieces of toys all made into these massive designs on our table. She wants to watch cartoons and nothing else and seems to zone out to them as she doesnt really realize what is going on around her. She becomes extremely upset when she cant watch cartoons and will cry for hours on end and she is not concollable. most of the time during the day she seems to just walk around aimlessly. She doesnt know to stop and get out of someones space she will be right up in their face. She also dont seem to get to leave our dog alone even when the dog bites her (small dog and doesnt leave marks thank god) she will just keep continuing doing what she is doing to it and doesnt seem fazed by getting bit or she will say owww and keep going. She loves to bounce and bounce and having a mini trampoline has helped with that. She will twirl around and around til she falls down and gets back up and do it again and again. She tries her hardest to avoid eye contact you can sometimes get her to look you in the eye if you are close up but if you arent she will look at you but not make eye contact. She has a very very limited food intake (bread, plain pasta, crackers, waffles, pancakes, certain cereals, corn, apples, mashed ptoatoes and french fries. on occasion peanut butter on a spoon, hot dogs, cheese and eggs)she laughs, giggles and cries inappropriatly. she will respond with a temper tantrum when you command her or request her to do something. Her demands must be met immediately. Hope I got everything in there.
At her last evaluation they did the Gilliams Autism Rating Scale but didnt tell us what it all meant her scores were:
stereotyped behaviors score 8
communication score 11
social interaction soce of 8
developmental score 7
her quotient score was 90.
She also had the Achenbach Child Behavior Checklist 1 1/2-5 her score were as followed:
affective problems 75
anxiety problems 70
pervasive developmentl problems 72
attention deficit problems 76
oppositional defiant problem 77

I dont know why they didnt go over the results with us. Any help you could give us would be so welcome. All they would tell us is that they wanted to wait and see. But I have heard so many things about getting them into treatment as early as possible and wanted to know what you though and if I should get a second opinion to see if they will diagnose her.
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Hi Lisa;

"Wait and see NOTHING!" It is unbelievable for that team to say that. The score of 90 on the Gilliam Autism Rating Scale means that those behaviors she exhibits as they relate to the behaviors used to make an diagnosis of autism according to the DSM-IV is at the 25th percentile compared to others who have an existing diagnosis of autism. Said another way, her "autistic-like" behaviors are more severe than 25 percent of others who have an existing diagnosis of autism, but less severe than 75 percent of others who have an existing diagnosis of autism. Any behavior rated over a 70 T-Score on the Achenbach is considered extreme and between the 98th-99th percentile, with T-Scores (roughly) between 40 and 65 to be in the Average or typical range.

Your daughter needs a full evaluation by a team of professionals expert in diagnosing autism in very young children. If you live in the U.S. then look for an autism center in the nearest public university near you or a Children's Hospital.

Did your school district do this evaluation? I a shocked hat whomever did this evaluation told you to wait and see. Thank Heaven for mothers, I mean that.

As I am sure you are aware I cannot diagnose over the Internet, but your daughter is at a significant risk for autism, probably in the Mild range if at all, as you have already guessed. Only a thorough evaluation will tell for sure. If you like, I can recommend what that "should" look like.

Let me know if I can help you further.

Kind Regards,
Jim

Answer
Hi Lisa;

Your experience is all too common. Autism has changed dramatically over the last 5-7 years ago in terms of severity and how it presents itself, and the medical profession on the practitioner level has not kept up. Even worse is the case with Asperger's Syndrome (AS). Not only has it really received any attention until these past five years or so, but the average age of diagnosis as little as three years ago was the age of eight! Basically, AS is differentiated on the basis of IQ. If a child presents with mild autism and has an IQ above the Mentally Retarded range (70), they are thought to have AS.

So, with these thoughts in mind and what I know of autism spectrum disorders (ASD), my idea of what constitutes  a minimum evaluation of ASD is:

1. A cognitive assessment (informal estimate due to age).

2. A GARS, which she has had.

3. A Gilliam Asperger's Disorder Scale (GADS) to rule out/in AS.

4. Speech and language evaluation to include a full oral motor evaluation.

5. Observation of her play, either formally using the ADOS and/or informally during structured play with her peers.

6. Parent Interview with the ADI-R, if her mental age is above 2 years.

7. The BASC-II, which is like the Achenbach but has an "atypicality" domain highly correlating with autism behaviors.

8. A fine and gross motor evaluation.


6. A sensory evaluation.

7. An executive function evaluation.


There you have Lisa. Don't give up. I'm here for you. If a few weeks go by before you contact me again, make sure you include enough information to jog my memory. I see so many children it's hard to keep them sorted on the basis of name.

You will get through this fine and Lisa will be okay. Do NOT wait a year or even a few months. Her window of opportunity for being responsive to intervention starts now and closes (somewhat) around the age of six.

Kind Regards,
James