Should I Push for an Official Asperger's Diagnosis of My Child

[FarmerBeth]

Here's the background:  My DS is now nearly 11 years old.  From the age of five he's been seen by specialists due to attentional problems, OCD behavior, ticks and poor social skills.  At age 7 he was diagnosed with ADHD and anxiety "in the Tourette's spectrum"

(meaning he tics).  There were always incongruencies with the diagnosis like the tics not being quite typical of anxiety induced tics, high attention span for pet topics, often under active except for interrupting, etc.  He took meds for the ADHD and his school concentration was much improved but the interrupting, tantrums (usually over perceiving someone changed or didn't follow rules), poor ability to transition, and tics like skin picking continued, despite no longer seeming particularly anxious and poor ability to deal with sensory stimulus.  The school tested him for social development this year and the results are fairly consistent with Asperger's.  As of now I am having him seen by pediatric occupational therapy for assessment on the sensory issues, but I didn't yet request medical follow on the social issues because the school is already doing a program with him on recognizing non-verbals, using voice tone appropriately, getting him out socializing and volunteering with some adult guidance, etc.  I'm worried that if I get an official diagnosis he will feel once again labeled.  I'm also worried that the label could cause others to perceive him as less capable or could make some extra curricular programs more worried about having him in the program than need be.  He's a bright young entrepreneur with awesome business sense, neat science ideas and good artistic ability.  I don't want to sell him short.  On the other hand, maybe an official diagnosis could open doors to further help beyond what he is currently getting from the school.  It could also give me something valid to explain to my mother in law and others who think he is purposefully misbehaving by "ignoring him" or "freaking out" when I can tell by this time that he is mostly doing the best he can (ADHD doesn't appear to be a good enough reason to them)

Sorry for being long winded.  I'd love to hear what others think, especially if they have been through this.

[Linda on the move]

I read your post yesterday but mulled it over before responding.  I'm curious when the last time was that your son had a complete neuro-psychology evaluation. Rather than seeing it as a "get the kid labeled Asperger's -- yes or no" thing, I'm wondering if anyone who really knows what they are doing has recently taken all the information about this very complex kid and tried to make sense of it.

My DD has the label Asperger's (among others). Here are our experiences with this label

• it made it easier for the school to make accomodations for her, but I don't know if that would be true for your son because it sounds like they are making good strides with his current labels. However, I'm wondering if a solid evaluation would give the school better information to tweak his experience. Rather than the big label, I'm wondering if the details that would explain the label would be helpful to the school.
• My mother wasn't any easier to deal with. Her exact words were "I don't believe. She's not one of Those people."  If you have a difficult family member, getting a note from a doctor doesn't make them any easier.   I wouldn't factor her into your choice.
• My Dd is high functioning, and I pick and choose who to tell. Her school knows, obviously, but she's doing so well right now that I talked to her main teacher about how much to tell the place she'll be volunteering this summer. We decided to not mention it and see what happens. No matter what your child's label, no one tattoos it to their forehead.
• My Dd likes the label "asperger's" (not the fact that it sounds like a burger made of a$$) but what the critieria and resources are. There are nice books for teens with aspergers. It helps her make sense of herself. She no longer feels weird, because she knows she is completely normal for someone with aspergers. Her having the right label and knowing and understanding that label have been VERY good for her sense of self.
• Some colleges have resources and support for kids with some special needs. We haven't checked into it too much (DD is 14) but I feel having the right label will make it easier for her to be successful in life.

The last thing I'll add, and I'm trying not to sound too negative, but upper elementary was a piece of cake compared to puberty. Puberty is difficult for most kids, for kids with special issues, it can be very, very, very rough. Depression and anxiety are common. Since your son is 11 and the storm for boys hits a little later than with girls, I'm guessing you are in a fairly easy stage with him and that things will get rougher in the next few years. For my DD, the roughest part was 12 - 13 1/2. If you are feeling like you *might* need to do something different if things get worse, I think you should get the ball rolling for whatever that *different* thing is now, because chances are, this is the calm before the storm. I could be wrong, I'm going by what I saw with my DD and some of her peers, and your son could be different.

Peace.

[jdsf]

Not as a parent, but as an advocate for students with ASDs, I think it is wise to ask yourself what this label is really going to change, and whether or not the pros outweigh the cons. If he is functioning pretty highly and doesn't need a lot of extra support academically, it's probably best for him to stay where he is. An ASD label could end up being a "Special Ed" label and make it harder socially as he gets older, I've known many individuals who were lumped into sped and tried to hide it from their classmates, to the point of going to a friend's house in the morning to ride the "regular" bus instead of the short one that was intended to pick them up.

[FarmerBeth]

Hi Linda,

Thanks for responding.  It's nice hearing from someone who's been through this.  The last time DS had a full neuro-psych evaluation was age 7, but he continued to see and be evaluated by the diagnosing psychiatrist until a year and a half ago, when she made the decision he could be followed by a GP from there.  We moved soon after to a different school and GP.  The school just had him re-evaluated by the school psychologist and the Speech Language Pathologist for his ability to process non-verbals and interact socially, and helped facilitate the referral for a sensory evaluation by OT.  Our new GP just got us a referral to a pediatrician to help sort this out.  I appreciate your comment about the puberty because I have to say that even this year has been so much harder because things he does that didn't bother other kids when he was younger are causing lots of problems, now.  What's especially difficult is that he doesn't get embarrassed or notice teasing but my middle child notices it very acutely for him and is very upset seeing him bullied even though he doesn't much notice.  I think I will get the ball rolling, although the school seems to be handling things really well without a medical diagnosis.  I could do with more help, especially for tics like skin picking.  I'm not too worried about the being lumped into special ed as this type of education no longer exists where we live (Nova Scotia, Canada), and the school has handled his IPP (individual program plan) for social skills very discreetly and without altering his academic expectations, although I think I may not mention it to some of the athletics people.  Part of why I have been nervous of the label is that before having kids I worked as a respite provider for special needs kids, and I saw so many families jumping through hoops to get their kids involved in social activities outside of school because the label made recreation leaders more nervous than necessary.

Thanks again!

[Linda on the move]

Originally Posted by FarmerBeth 

 I appreciate your comment about the puberty because I have to say that even this year has been so much harder because things he does that didn't bother other kids when he was younger are causing lots of problems, now. 

What happened for my DD was that after she was about 12, she realized how different she was. That was when the sh*t hit the fan. Before, she never realized and therefore never felt bad about it, but after she realized, she started having panic attacks every.single.day. I feel like this phase is difficult because everything is changing so fast for kids, and for kids with issues, they are already a little behind and they mature at a different rate. My DD is doing REALLY well now at 14, but it was bumping getting here.

What's especially difficult is that he doesn't get embarrassed or notice teasing but my middle child notices it very acutely for him and is very upset seeing him bullied even though he doesn't much notice. 

this is something else we have in common! My sn DD is my oldest child, and her sister is just one grade behind. Although my older Dd has been teased a tiny bit from time to time, nothing has ever gotten under her skin. And since she really does ignore it and not care, the other kids move on to another more responsive target. Her neuro-typical sister, on the other hand, has gotten very upset over small questions about the accommodations her sister has at school. Little stuff that isn't bullying, just pointing out the differences.

I'm not too worried about the being lumped into special ed as this type of education no longer exists where we live (Nova Scotia, Canada), and the school has handled his IPP (individual program plan) for social skills very discreetly and without altering his academic expectations, although I think I may not mention it to some of the athletics people. 

That was our experience too. In middle school, my Dd had communication issues with teachers, so she had one period a day with the special education teacher to act as a go between with my DD and her other teachers. It was for things like not understanding what she was supposed to do for homework, and being completely unable to say so in regular class. It was really quite minor, and she had that period instead of a study hall. Having that period didn't mean anything else about her day, bus, etc. There are some challenges to changing classes and multiple teachers that Dd wasn't able to handle without help, even though she is quite bright and can do regular school work.

Part of why I have been nervous of the label is that before having kids I worked as a respite provider for special needs kids, and I saw so many families jumping through hoops to get their kids involved in social activities outside of school because the label made recreation leaders more nervous than necessary.

Where you live, would you have to say? Here, I don't have to disclose to any one unless I feel it's necessary. Are there specific kinds of things you think he would enjoy that we would have trouble getting into?

[Emmeline II]

I think now is a good time for a neuropsych reevaluation; you don't have to share it with the school. My son's evaluation considered Asperger's and all the pre-appointment surveys pointed to it and 3/4 of the team thought so, but the doctor did not think that we had eliminated other possibilities first and I agree with her reasoning. Also, ds' evaluation included an IQ test.

I don't see the "short bus" as an issue. I have a nephew who rides one but he needs specially trained personnel that can manage his disabilities. An Asperger's diagnosis doesn't automatically put a child on the "short bus" unless they have issues on the bus that require special attention and they "have" to ride the bus. Last year ds had to stop taking the bus due to his aggressive behavior but he didn't have a diagnosis at that point; if I had no choice but to have him use a bus I suppose he would need the "short bus", but his current school has no buses so it isn't an issue.

Hear is a search for "ADHD grandparents"; you may find something useful in dealing with your MIL:

http://www.google.com/search?q=ADHD+grandparents&ie=utf-8&oe=utf-8&aq=t&rls=org.mozilla:en-US:official&client=firefox-a

[FarmerBeth]

The main activity he enjoys that I'm a bit worried about whether to mention or not is the outdoors program with municipal rec.  They have a health sheet for all the kids but it basically reads like "Are there any medical conditions that may impact upon the program".  So far, they have something to the effect that he has ADD and if he has a behavior issue let me know.  the last time the leader was worried his attention may affect listening skills needed not to get lost in the woods, he asked if I could get the Dr to "Tweak his meds or something" so that he could be "safe and less disruptive".  Whiile we were seeing the doctor anyway, really what helped were a lot of specific rules about the program.  If i don't mention anything beyond the current information, I think the comfort level of the leaders will be higher as ADD is something they are familiar with.  (I personally think his safety is fine from having spent his whole childhood hiking and doing woodland activities with family.  He does have good habits about the important stuff.

[Linda on the move]

would his other issues likely impact him in the program?

My DD has intense sensory issues, and I put that on forms for programs.

She doesn't have any behavior issues, and often when she and her sister were younger they would be in the same things, so her sister could handle communication issues if need be. My experience has been that most programs are more concerned about behavior issues than quirks.

I tend to avoid the word "autism" on forms like that because it is such a huge spectrum that it didn't really indicate what was going on with her. DD has so many labels, I could pick out a *lighter* one that better explained what might come up for her. 

I'm not sure how it works in Canada, but here we have two levels of accommodations at school. IEPs are generally more intense, and 504s are milder. DD was on a 504 at school, so I put that on forms for programs because I felt it indicated that she sometimes needed something a little different, but that the issues were fairly mild. So I would say something like:

"DD has intense sensory issues and is on a 504 Plan at school. I believe that she will enjoy this program very much and not have issues participating, but sometimes some activities are scary to others that do not seem scary to others, and she should never be forced to participate."

On some things that I thought would be really good for her but more challenging, such as gymnastics class, I've gone into a little more detail.

[FarmerBeth]

For the most part, I don't think his other issues outside of attention are much of a problem.  He does have sensory issues with noise, but I haven't had him in any activities recently that would set this off (Still can't use blenders or drills around him and he barely started managing the vacuum cleaner 2 years ago.  Lately he copes by kind of humming loudly with the noise).  But he mostly does outside activities so I don't think this will be a problem.  I think I can leave the forms as is but maybe have a reminder that he responds well to concrete rules.  Almost all of his recent behavior issues have been upset because someone broke a direct rule or he got reprimanded for something that he says no one told him was a rule.  If a rule is explained explicitly ( like, "While the leader is speaking you need to look and listen to the leader and stay in your spot, and wait until everyone has stopped speaking before saying anything) he does much better than if he gets something vague like "Be on your best behavior"  or "Pay more attention".  I'm volunteering his next couple of outdoor program days, so I'm hoping I can reinforce some concrete rules. (I have to say one of the program leaders was so vague with me about DS's behavior, I had no clue what he meant.  I had to talk to another leader who more concretely explained that he was vaguely wandering in circles and talking to one of the other boys instead of listening to instructions)  I usually have to explain the skin picking, too.  I so far just say it's a tick and the best way to handle it is to give him something else to do.

By the way, here in Canada (well, Nova Scotia at least) the adaptation levels  are called "adaptations" at the lower level, meaning nothing is different about the curriculum but there are devices or strategies in place to help the student succeed (like dyslexics doing non language arts exams orally or the teacher having visual cues or maps to help a child organize belongings).  Until this year, DS was only on adaptations.  IPP (Individualized Program Plan) is the higher adaptation level and it means either the expected outcomes or the curriculum have been somehow altered.  As of this year, DS is on IPP, but only for social reasons.  His academic curriculum stays the same but he is in a swim program for special needs kids at  the school and in a volunteering program, both with the intent to give him some practice with social skills.  He also is allowed to give the teacher a cue if he needs to leave the class and go to the sensory room to calm down.  I've never thought of using that to explain needs outside of school because not everyone seems to be familiar with it.

[Linda on the move]

another thought on outside programs -- some programs are run by adults who really know what they are doing and know about child development and have at least a slight clue about sn. Some programs are run by college students who need money and have a little oversight by actual adults. DD does better in the first kind of program. It's OK to ask questions about the qualifications of the staff that will be interacting with your child.

We've had some great experiences with adults who are doing things they are passionate about, and some not great experiences with the college student type things.

I also try to feel out if programs are more about having a cool experience and/or personal best, VS if they are really about achieving a level of proficiency and/or competition. Dd does best in the first kind of program.

Ironically, one of her best experiences was on a competitive swim team, but it was all about personal best and the coach had such a heart for what each kids wanted/needed from the program.  We moved and tried another swim, which was run by college students who were only interested in the cute social kids that were natural swimmers.

[kavamamakava]

Originally Posted by FarmerBeth 

Here's the background:  My DS is now nearly 11 years old.  From the age of five he's been seen by specialists due to attentional problems, OCD behavior, ticks and poor social skills.  At age 7 he was diagnosed with ADHD and anxiety "in the Tourette's spectrum"

(meaning he tics).  There were always incongruencies with the diagnosis like the tics not being quite typical of anxiety induced tics, high attention span for pet topics, often under active except for interrupting, etc.  He took meds for the ADHD and his school concentration was much improved but the interrupting, tantrums (usually over perceiving someone changed or didn't follow rules), poor ability to transition, and tics like skin picking continued, despite no longer seeming particularly anxious and poor ability to deal with sensory stimulus.  The school tested him for social development this year and the results are fairly consistent with Asperger's.  As of now I am having him seen by pediatric occupational therapy for assessment on the sensory issues, but I didn't yet request medical follow on the social issues because the school is already doing a program with him on recognizing non-verbals, using voice tone appropriately, getting him out socializing and volunteering with some adult guidance, etc.  I'm worried that if I get an official diagnosis he will feel once again labeled.  I'm also worried that the label could cause others to perceive him as less capable or could make some extra curricular programs more worried about having him in the program than need be.  He's a bright young entrepreneur with awesome business sense, neat science ideas and good artistic ability.  I don't want to sell him short.  On the other hand, maybe an official diagnosis could open doors to further help beyond what he is currently getting from the school.  It could also give me something valid to explain to my mother in law and others who think he is purposefully misbehaving by "ignoring him" or "freaking out" when I can tell by this time that he is mostly doing the best he can (ADHD doesn't appear to be a good enough reason to them)

Sorry for being long winded.  I'd love to hear what others think, especially if they have been through this.

Of course your son is more than a label, but it's a handy shortcut for explaining things when you are in a new situation. If you feel your child is not being supported enough at school and his tics and social deficits are negatively impacting his education, this needs to be documented. Without a diagnosis, it's a lot more difficult to document. Even the process of diagnosis is often helpful for isolating the deficit and finding ways to support your child and give him the skills he needs to overcome the deficits. A full neuro-psych workup should give you a lot of feedback on how best to support him. Do it now because it will be much more difficult in high school and college. A label isn't going to change who he is because he's not going to change who he is. It's just an easier way to explain a collection of challenges your son has to people who don't know your son but are supposed to be part of his education team. 

[FarmerBeth]

Thanks so much for all the great advice.  Last week I arranged for a full neuropsyche evaluation as his tics are becoming a health concern (he picked until he had an infection and since it was on his normally clothed legs we didn't know until it had gotten worse) and the social difficulties are making things difficult for the younger siblings.  Besides education concerns, we decided a diagnosis might lead us as parents to some help.  It's been really good to hear from others who have been in this situation.

[kavamamakava]

I hope it helps. Diagnosis is just a word and didn't seem to make much of a difference in our lives. But over time, as I build his support team and find more ways to support my son, I'm sure I am making a difference.