talk to me about aspergers

[jnpsmommy]

My 6 year old son is in grade 1 and we are in the process of trying to get him evaluated. The first evaluation he had done back in September felt that he was somewhere on the spectrum but felt he was "too social" to have Aspergers. I disagree with this as, yes, he is social, but he doesn't seem to know how to interact with other kids in a socially acceptable way. He is definitely struggling socially.

I am just woondering if there are others out there who have a child with Aspergers or somewhere on the high functioning end of the spectrum and specifically what does Aspergers "look like" in your child and how has it affected their life? I know all the "symptoms" of Aspergers but i guess what Im hoping for is more personal stories to give me a better idea of how Aspergers manifests itself in the lives of other children. Does this make sense? lol

thanks

[Emmeline II]

Who is evaluating him? We had ds' evaluation done at a specialty clinic at a children's hospital.

Ds will soon be starting speech therapy (ST) for social problems; more specifically, social reciprocity and pragmatics.

     Social reciprocity involves an individual participating in long chains of back and forth interactions.

•          Being aware of the emotional and interpersonal cues of others

•          Appropriately interpreting those cues

•          Responding appropriately to what is interpreted

•          Being motivated to engage in social interactions with others

Pragmatics-- A person may

•    say inappropriate or unrelated things during conversations

•   tell stories in a disorganized way

•    have little variety in language use

You don't have to wait for the Asperger's evaluation to do one with an ST.

This is what I typed up after ds' evaluation:

Ds' appointment was from 9-1.

1.       I did an intake summary for 10-15min. with Dr. in “playroom” for 10-15min. (room with table, bed sized bench, toys and a one-way mirror)

2.       Filled in more surveys (filled out a couple extensive surveys pre-appt) while the Dr. did some sort of table flip chart with ds; then followed the speech evaluator, testing ds in the playroom.

3.       Did history of ds with Dr., from pregnancy to present, in exam room.

4.       Dr. did physical with ds, then health and family history with me in exam room.

5.       Ds went to do psychological and IQ testing in playroom while…

6.       I filled in more surveys with social worker in exam room.

The official schedule was:

09:00-11:00      MD                            Medical/physical

                         MA CCC-SLP            Speech/Language

11:00-1:00       PhD                            Cognitive/achievement

                         LMSW                       Psychosocial/adaptive

There was also a student there observing.

The doctor said that she could see why I was concerned about Asperger's (ds currently has an ADHD/w disturbance of emotion and conduct diagnosis from his psych) but also said that ds was on the borderline (regarding age) for diagnosis. I was so tired after that appointment; Ds' therapy appointments tend to wipe me out too, though I usually only talk briefly with the therapist then sit in the waiting room with dd.

The results (as transcribed from the Dr.’s teeny tiny handwriting)

1.      Average to high average ability (performance IQ – TONI 3 =117 > verbal SIT-R 94).

2.      Achievement commiserate with ability (WIAT II – word reading =140, reading comprehension =121, spelling =130, numerical operations =102).

One score somewhere was abnormally low; I think it was part of the verbal SIT-R, a section with “strange stories” where you identify what someone is feeling knowing that the feeling is not what they said (like a person who hates apple pies saying “thank you, it’s just what I wanted” when given an apple pie—why would they say that? because they didn’t want to hurt the giver’s feelings).

3.      Mild to moderate pragmatic language disorder.

4.      Social developmental delay; in part due to ADHD.

5.      ADHD combined.

6.      Disruptive behavior.

7.      Anxiety (performance and social anxiety)

8.      Chronic motor/vocal tics

9.      Possible CAPD.

10.  Hyperacusis/sensory concerns.

Therapy Referrals

1.      Speech therapy with attention to pragmatics.

2.      Continue CBT to address anxiety and behavior.

3.      CAPD evaluation.

4.      OT to address sensory concerns.

Regarding Asperger’s, the Dr. said that he appears to meet the criteria but that he was a little young for diagnosis and that the ADHD complicates the picture (she went into a lot more detail than that; apparently the diagnostic team spent a lot of time debating this point). We will reevaluate in a year – added maturity and addressing some of his other issues may give us a clearer picture. The appointment took about 2 hrs.

Edited by Emmeline II - 3/11/11 at 12:11pm

[heatherdeg]

Well, they're not really SUPPOSED to dx Asperger's until they're 8yo.  At 7yo, kids go through a major maturity milestone and waiting until they're 8 somewhat ensures that all of those awkward social growth issues are either completed or not completed (indicating a true issue).  Same for an autism dx before 3yo... but in both cases: you see it all the time.  

And my son really isn't any different.  He's carried a PDD-NOS dx since he was 3yo but we took him to a specialist that had no problem issuing an Asperger's dx.

Mine is INSANELY social but has very serious problems understanding social cues, boundaries, being able to advocate for himself with "friends" (in one case, a child held him down against his will and his bigger concern was not kicking to get away because he might hurt his "friend", or his "friend" might tell on him ).  He definitely struggles with pragmatic stuff.  His eye contact is (and always has been) really bad; and he is now down to pockets of obsessiveness which usually manifests in persisting to try to get the kids around him to talk about or play something they have zero interest in... for hours (if not days) on end.  The latest being Pokemon.  He just doesn't understand why they won't play or talk about it.  And he will not be swayed--even though he now DOES have varied interests (and has for a few years).

HE. CANNOT. GET. ENOUGH. TIME. WITH OTHER KIDS.  Seriously--he'll be out playing with various kids in the neighborhood for LITERALLY 7 hours and come home in a tantrum because he "didn't even get to play".  It's insanity.

Oh... the tantrums.  Yeah.  Those.  Wow.  Less frequent than when he was 4yo and I was so desperate for help that I was looking at books targeted to people dealing with children with Reactive Attachment Disorder (formed no bonds in infancy/toddlerhood so no real regard for authority and no real connection with others to motivate respect/good behavior).  It was bad.  So now, they don't happen that bad too often--but when they do, they're REALLY bad.  Ergo, we are now in therapy with him because the overall negativity, the tantrums, the complete lack of motivation, and the difficulty he has had with a new sister (she's 2) and a 1500 mile relocation just need to be dealt with.  The therapist is a Psy.D. and he was overwhelmed with what we were telling him at the initial parent meeting--and believed it was Asperger's.  I don't know.  Maybe it is:  my father is either high-functioning autistic or EXTREME Asperger's (refuses to deal with it, and his siblings are also affected) and my husband is suspected of Asperger's (although not nearly as severe as my father--but has made it difficult to be married to him).  So there's that.  But there are so many other things going on with my son that could explain a lot of these issues, too.

I'm not really up for more testing.  My son has been tested and evaluated for most of his life since about 10mo (he turned 7yo in Jan.)  But they can do the ADOS testing on them.  I just got the first round of "parental observation" questionnaire and I'm fairly certain that the ADOS will be recommended next; but I'd rather let it go until next year.  His existing dx of PDD-NOS is age-appropriate and will get insurance to pay for a social skills therapy group--so I'm not really worried about that.

Whomever is evaluating your child doesn't sound qualified to be evaluating.  "Too social for Asperger's"...?!?  Seriously?  Ummm... kids with Asperger's are often at serious risk of harm because they are very social--and so desperate to have that social interaction that they get taken advantage of in a multitude of ways.  They are at extremely high risk of depression problems because they are desperate to be socially involved and simultaneously incapable of figuring out how to do it.  I think that most of the general populus expect kids in the spectrum to be socially withdrawn, but a specialist should know better.

Find someone that knows what they're doing and can administer an objective test.  If you need a dx at all.  The schools are only obligated by law to address any issue that impacts the child's ability to learn in a classroom setting (even if they are not IN a classroom setting).  So while the social issues are indeed serious issues, if they do not inhibit classroom learning--you will be blessed to get assistance or an IEP for it.  And getting an IEP is not diagnosis-dependent.  By law.  So if the school told you that you needed a dx to get an IEP, it's time for you to learn the law & your rights.

If you feel you need a dx because you're looking for help that insurance won't cover, that's another story.  But then find someone who is qualified to do that eval--because whomever you're dealing with clearly isn't.

[KCMichigan]

Heathers post is great!

How are getting an eval?? Often , if you go through the schools- no matter the dx, you need an academic impact for services like an IEP per law (some areas are more generous than others in defining academic impact- some do grades dependent and some areas allow for behavior to impact learning even if at grade level, other areas will be more proactive in addressing social concerns). If you are doing it for private eval (insurance based therapies) make sure you get someone that is very familiar w/ ASDs and does a complete language eval (often ASD kids will have some language concerns that do impact social skills-- dont get idioms, hard time with jokes, pragmatic stuff...) and a social/emotional eval.

Just curious- is your DS young for grade?? Sometimes that plays into the developmental skills (DD acts much younger than her age in social groups). Normal for a young 6 yr old may be different than an old 7 yr old. ( some kids are 6 in K- so K -like behaviors would not be considered out of the norm, even if the child is in 1st with peers that could be ages 6- young 8). DD 'blends' in better now that she is in the older end for her peer group ( Oct Bday and Sept cut off here) than when she was young since she acts younger than her age. Our area also holds a lot of kids for K- so when she goes to K next Fall, she will not be the oldest. So kids will be a barely 5 to a solid 6.75 when starting K in this area next Fall.

 As a former teacher, it makes it hard to sort out the 'less severe' or mild social concerns in kids 5-8 since there is such a wide variance of normal. That is why they often dont do an Aspergers dx until age 7/8--- some kid who have trouble when young- do better as they get older and would no longer qualify. Or some kids are slightly immature--- but then also young for grade and it looks in the classroom like a greater delay than is shown on evaluation due to the wide range of developmental normal for ages 5-7.

My DD also has a PDD_NOS dx (since age 2.75) & SPD- and a few others things going on. Developmentally- it is good for us and as Heather said, usually they do not like to dx Aspergers until age 8ish (3rd gradeish) since then most normal social rules have been establish and kids have internalized social dynamics/rules etc. Speech patterns/language also are more developed so it is easier to determine normal variances from a true delay.

DD at 3 looks very different than at age 5.

At 3: lots of echoing, difficulty answering questions, but extremely high vocabulary and used language to describe things, toe walked often, spun, lots of fears, poor eye contact, sensitive to noises/bright lights, but very curious and social. Very physical (jumped onto peoples laps, hugger, climbs things), chews on things, and would talk to strangers endlessly. On an IEP (age 3-4.5) and had been in Early Intervention from 6months to age 3.

At 5: less toe walking (but still there when shoe less or stressed), very good an language but sometimes answers questions with odd language, still sensitive to lights/noise but able to tell us before she melts down, very very curious and asks a lot of questions. High pain tolerance but quick to tears (usual in frustration).Still physical- but getting better (hugs too hard, touches people), lots of creative play, oblivious to social rules at times and will play by herself a lot  happily and she is very worried about if people are happy/mad/sad (but at times can have a hard time telling which they are). Suspected gifted due to very advanced academics (reading/writing) but socially immature. Likes adults more than kids and often hangs out with teachers/instructors, etc.

It impacts our lives in the senses that we watch her closely for 'meltdowns' and/or overstimulation situations. She simply can only handle so much before shutting down (getting less verbal, wandering aimlessly, fingers over ears, etc). We also try to make sure that we are meeting her sleep/eating needs- the more scheduled we are the happier she is ( wake up and eat at roughly the same time). She does not like typical activity stuff that kids her age might (no movie theaters, music concerts, Chucky Cheeses, fairs/festivals, etc) but loves the same toys (Strawberry shortcake, polly pocket, My little pony, etc).  We have done a lot of  social stories, role play, and she has had OT & PT- as well as social skills classes.  She is in PreK now and does great, she may need modifications in K for stamina, social skills, and reminders not to touch friends/people. It helps that she is very rule oriented and fairly easy to discipline (she does not want anyone mad at her). We give her lots of physical interactions (hugs, hold hand, snuggles, etc) since it seems to reassure her and she seeks it out.

I think as she gets older, she is learning how to adjust and also how to avoid things that bother her ( simply tells us her ears hurt and she wants to leave instead of screaming). She is also very social and friendly- so she is learning , with practice, how to relate to her friends. She has a twin so that is helpful to her social interactions. She is quirky-  but most people now do not notice it unless they spend a lot of time with her--- vs when she was younger and it was obvious since she was the one under the table at the resturant with her fingers over her ears or the one sitting with all the adults humming softly at playgroups.

I love love love her way of looking at life (loves nature and animals)- she has such a way with words and is such a sweet girl.

Edited by KCMichigan - 3/16/11 at 6:31am