Should I evaluate my 9yo for Aspergers?

[becca29]

My son is 9.5 years old. He is extremely smart, has friends at school and in his Kung Fu class, and I often get compliments from other adults as to what a friendly, well spoken child he is. I have never had a concern brought up to me about him socially at school or anywhere else. 

However, I have always felt that something was not quite right with him. When he was younger I just thought he was an extremely spirited child who jut got into everything. Then I thought, maybe it's food allergies or dietary stuff. (He does have an allergic disease of the esophagus). Then I thought maybe it was sensory stuff, as he has issue with that. He is our oldest son of three boys, and is by far our most challenging. Many times I was close to getting some help, but in the last few years he has calmed down a lot. When he was younger I worried more about the extreme tantrums he would have. (1-2 hours, vs 15 m for our younger sons). Now I worry more about him socially. 

What is he like now? He loves books, and will sometimes read 6-8 hours a day. If it's not books, it's legos. he loves TV and video games, but I limit it quite a bit and often take it away completely). He prefers to be alone and has probably asked for a friend to come over maybe 5 times in his life. He complains and worries a lot about friendships, but does not seem to understand what he needs to do to be a friend. (His teacher says he will hurry up and eat his lunch, then go grab a book and ignore people who talk to him). He does not have good control of his body, and often gets in peoples faces, yells or makes loud sounds, plays much too rough. He does things he thinks might be funny, like run up and make a noise in my face, and not understand why I get mad. His younger brothers can be playing fine for two hours, and he gets in the mix and everyone is crying in about ten minutes. Getting him to do anything is a huge process as he is motivated by hardly anything at all. He will do things only because he wants something, never because it is a nice thing to do. He gets little pleasure from doing something nice for another person. However, he is a very loving child who needs A LOT of attention and love from me and my husband. He will stick up for his little brother on the school bus. He adores his cat. I could go on for pages but I'd better stop...:-)

I had pretty much decided he was jut a strong introvert (like my husband) with bad social skills who would always be challenging. But then I picked up "The Journal of Best Practices" written by a husband who was diagnosed with Aspergers when he was 30, and what he did to save his marriage. I had just heard about it and thought it looked funny (and it was it's a great read!) But as I was reading it, all I could think was that this guys sounds exactly like my husband. (Who is also sweet, sensitive, introverted and difficult! :-) And then I began to think about my son as well, and stuff started to click into place. 

This brings me to my question. At what point do you decide to evaluate a kid? When are they just introverted, quirky and challenging and when do they have Aspergers? I  am a teacher myself and I hate how labels are thrown at kids (boys especially) so often these days, which is why I am so hesitant. And our boys go to a school that does nto rush to label kids, they really look at the whole child and are very accepting of who a kid is. I often feel that if we were at a more traditional school a label might have been picked for him a long time ago. I don't want to label him if I don't need to. I know his teachers will look at him differently if he gets a title called Aspergers. But I also worry that he is retreating more and more into his own world with little interest in the world around him. I don't want to look at him when he is 17 and think we should have looked into things.

Well, I've written a small book here. Thanks for reading! I would love to hear from any other moms who have a kid diagnosed with Aspergers, especially if they got it later in that child's life.

Thanks!

Becca

[heatherdeg]

I don't know.  We were thrown into evaluations REALLY early (infancy) because of developmental delays and the suspicion of cerebral palsy by our ped.

Now, I think I would test if  1) there were problems that were impacting my child's day-to-day living like most kids his age (not that he needs to live that way, but it should be an option--so if it's not an option, I would be looking for "why"); or 2) I was having a really hard time determining an appropriate setting or education for them because of these issues.

Not sure if that helps...?

[Linda on the move]

What about a social skills class? The one my DD (who has Aspergers) went to was open to kids whether or not they had a diagnosis of anything. It meet once a week for several weeks and the practiced social skills, learned to carry on a conversation, learned to read body language, etc. It was really worthwhile for her.

I also recommend finding ways to use his interest to connect to other people. Some cities have lego clubs. Be proactive about working with him to invite friends over to play -- don't wait for him to bring it up. Invite other families over who have kids similar ages and all hang out. Have family board game nights. Find some place where you guys can volunteer together (this might be impossible due to his age, but will be possible later, and I think is very important).

There are a lot of ways to help him develop social skills with or without a label.

I think the point to get a child evaluated is when you are out of ideas and need professional help. I also think it is more positive to go in with a desire for an evaluation and the information that comes back from it, than with a preconceived notion of what the label is and just there to get it rubber stamped. My DDs eval told us a lot about her besides her diagnosis, and all the other information has been very helpful in making decisions and plans for her.
 

I don't know if your son has Aspergers -- some of the thing you list are flags, but some only very mildly. And there are several flags that you don't list. It does sound like you could you some help in figuring out your complex kiddo, and figuring what parenting techniques might be help him develop into the best version of himself.

[Mittsy]

What would you want out of the diagnosis? We stopped the diagnosis process with my dd when her evaluator, as well as a few other professionals, told us she could be labeled as high functioning aspergers but that she was too high functioning to receive most therapies/interventions. We homeschool dd by her choice, we have been taking care of her sensory needs by creating a sensory room suited to her specific difficulties, and she gets social interaction multiple times weekly..... we had no need for a diagnosis which would only serve to label her negatively.

[Linda on the move]

Having a diagnosis has not negatively impacted my dd at all, quite the opposite. Knowing and understanding her dx paved the way for self acceptance - she knows that she is perfectly normal for someone with Aspergers.

Others in her life are on a "need to know basis." When she is in a situation where it will help her in some way, we tell. Otherwise, no. It's not like they tattooed it on her forehead!

Also, being on the spectrum isn't negative. It just is. Like being tall or short, is it just something about a person. And if you don't believe that and your kid is on the spectrum, they have no chance for making peace with themselves, whether or not they are ever diagnosised.

Fear of the label is NOT a reason to not find put what is really going on with you child.

[aspeechthx]

Here is personal family story to consider: I have suspected that my nephew has aspergers since he was 3 years old. He is now 21. Unlike your family, his family was not understanding or even willing to see that he was different than his peers. (Yes, I brought it up several times and introduced them to the term "aspergers", but they didn't pursue it. I only saw him 2 times a year at holiday gatherings.) They expected him to behave in ways that they understood and they seemed to be disturbed, put out... by his odd interests and what seemed to be anti-social ways. Long story short, he left home at age 18 and is estranged from the whole family. I believe he would understand himself better if he had a diagnosis and his family and others in his life may have been more accepting of his differences.  I am a proponent of a proper diagnosis for most kids. Not because we can then change them, but because then we can help them accept and  cope with their differences...

Just a thought. Hope it helps!  

[Mittsy]

Linda on the move: I do not fear the label, and having someone confirm my beliefs about dd has helped some. I have always tried to teach acceptance and coping skills to whatever issues dd is currently having a hard time coping with. I also explain that everyone is born with certain challenges and gifts, and we find ways to work through the challenges and celebrate the gifts. I have also introduced her to other children whom would share the same diagnosis so she can get some community. I do not feel we need a diagnosis for this, but later on in life if it will help her and she is interested we will look into getting a "label".

Unfortunately I have seen children and adults on the autism spectrum get treated very negatively. I have seen others expect less of them, bully them, refuse to be friends with them, try to push medications on them..... because of the label. I am glad to hear that your daughter is not experiencing any of that though.

[heatherdeg]

My Aspie has been bullied by people who have no clue what his label is or that he even has a label.

[becca29]

Thanks for the input. I think what we are hoping for is some extra help to help him to be successful. My husband has an especially hard time with him (since he most certainly seems to be an Aspie himself, guess that makes sense:-).

A perfect example is last night. We have family movie night every Friday. The boys watched a movie, then asked if they could watch one episode of Ironman before bed. I replied "only one" but as soon as it was older, my 9yo asked for another. I replied no, it was bedtime and they could watch the second episode tomorrow after they did chores. My 6 and 4 yo's complained for about five minutes, realized we were sticking to our answer, and went to bed. My 9yo spent the next 90 minutes freaking out about it. He'd go in his room, come back out and throw something down the stairs.He went around the house turning on every single light. Started dumping things out of boxes, knocking stuff off tables, calling us names, etc. My husband and I have gotten pretty good and staying calm when he is like this as to not escalate the situation, but he still goes on and nothing will stop him until he pretty much burns out and falls asleep. And no consequence sinks in, he is completely fixated on what he wants. He had two options: #1 Knock it off, go to bed and watch it in the morning, #2Keep it up and not watch for a week. He just could not let it go.

Thursday he came home from school and spent 6 hours at his desk decoding "dragonese" from his 'Ology books. 

I picked up Perri Klass's "Quirky Kids" book at the library and has a lot of good info. Executive Skills are a huge problem for him, so maybe that is some of the trouble. Ans seeing the difference in my two younger sons now that they are older, I see now so much of the trouble we have had with our oldest has always been there, we just didn't realize it. Sometimes I wish we did have a diagnosis. The other day our son was just being obnoxious in the backyard, shrieking, shoving both brothers around, and my husband caught our neighbor just staring at our son with a look of disgust. If I could say he has XYZ to certain people, maybe it would help them be more understanding? But I don't think I'd go around advertising it to the world unless I thought it might buy him some more patience. 

[geemom]

Hello, I am sorry to hear that you are struggling!  Trusting your gut is always best, and as some great replies have mentioned, there are 2 sides to diagnosing.  I feel like the first step in DECIDING whether or not to diagnose is to start with the therapies that would be implemented should you get a diagnosis and see if the "shoe fits".  This is not committing to getting a diagnosis, not committing to not seeking diagnosis, not committing to agreeing your DS has the disorder, but at the same time not ignoring or denying the potential problem.  

  Most of these behaviors (imho) are going to be caused by a root of anxiety (rigid thinking) or sensory issues.  He might have NEEDED the movie to self soothe... which means NOT that you give him the movie, but that you evaluate other ways he could self soothe and possibly replace the movie, OR, make a rational decision outside of the movie tantrum that this particular child would benefit from watching movies until he falls asleep.  It could be that the movie stimulates him too much right before bed, in which case moving movie night hours to earlier in the evening followed by a transitional activity may be best.  You would be the expert on this, but maybe it is something to think about.

Occupational therapy would help you determine his potential sensory needs.  You do not need to necessarily go to OT forever, but at least get some information from the OT re where his deficits lay and ways to help.  I need to go back to my dd's ot and reevaluate her needs as they have progressed, but originally I had found out (many things) but for example one was that she needed sensory input which I was able to provide outside of OT.  

The label is a description of a set of behaviors.  Solving the problem "part to whole" you could look at the behavior you want to change and try to change it... one at a time.  If your gut tells you that this child has a broad issue going on that needs attention, then you could solve the problem "whole to part", diagnose, then try remedies.  

Either way, to diagnose, you get to come in with a description of the behaviors.  He obviously is intense and does not give up easily.  That in itself is not a disorder.  The caveats of the AS are going to be the eye contact and the narrow interests, I think.  Does he have any tics?  You will be describing and checking boxes with doctor then specialist then specialist then therapist... etc.  You will also become confused because you will have to reflect on the past NINE YEARS when answering questions (omg, he never used to make eye contact in preschool and he would spin on the tire swing for an hour!) for example.  The starting point comes from documenting behaviors and evaluating them... which brings me back to the part to whole strategy.  It is a nice way to go because you are not locked in to anything, so the pressure is less.  It is hard when we are in the thick of it!  Hugs.

 

[myk]

i would definitely have him evaluated. i've known i was different since i was a kid, it was like i was missing that part of the brain that made friendships easy. i desperately want friends, and i make friends, and i don't keep them because of a string of grievous faux pas i commit on a regular basis. i'm 38 years old, and i have just taken some tests based on simon baron-cohen's work (which is considered quite reputable) and EVERY SINGLE TEST came back aspie.

i can't tell you how much i wish we had known this 30 years ago. if we knew WHY i was weird or how to deal with it, it would have saved me a lot of heartache. i could have at least told my close friends about it and maybe they'd have more patience with me instead of writing me off.

[DaughterOfKali]

Getting a professional, full evaluation by a neuropsychologist could help your son get helpful services in school.  Most evaluation reports will include suggestions for both school support and home.

I do recommend getting an evaluation.  My son just broke down last night and was crying about how alone he feels (no real, good friends) and how he hates autism.  He also was so mad that the public school he was in didn't teach him strategies to keep/get calm, they would just tell him to go sit away from everyone else and calm himself.  He doesn't know how to calm down by himself.  He needs to be taught/shown how and he needs help through that process. 

A good program/school could make a world of difference.

Good luck!