r2i forum

Seeking inputs from forum's doctors and parents for our parenting dilemma. Thank you for your valuable suggestions.

We have a 10 years old daughter in 5th grade in a U.S. public school. She likes to paint, read, and loves school, music, tennis and does well in studies, plays nicely in small groups at school or in our apartment complex play area.

A few months back her teacher called us in for a meeting and said that our daughter sometimes wants to read books instead of playing, sometimes plays by herself away from others, and sometimes gets bothered if things in the classroom do not go as scheduled or if there is too much noise. She said that though there are also many periods when she is totally normal, we should talk to the pediatrician and get her screened for Asperger's Syndrome.

http://kidshealth.org/parent/medical/brain/asperger.html
http://www.webmd.com/brain/autism/mental-health-aspergers-syndrome

We researched it and were left with the conclusion that in this country totally normal behaviors in children are taken, labeled, and a whole industry springs up around them. We do not want to deny facts about our daughter, but want to be careful in what labels we accept for her.

We decided against getting her screened. Friends, close relatives, and teachers from previous years who know her very well also do not think there is anything at all wrong with her. However, once in three or four weeks there are incidents like forgetting homework, obsessing too much about the Percy Jackson book series, bothered by loud noise in restaurant, when we doubt our decision, and think we see some signs of Asperger's in her. These signs are so infrequent and generic that it is a toughie to decide if that is only a normal 10 years old's behavior or something more.

We would be grateful for any advice. We are worried most about the effect screening could have on her young mind, college admissions and future job interviews. Should we get her screened for Asperger's Syndrome or should we read up on it and try to help her ourselves as much as we can? Even if she technically has it, it is probably only borderline is our gut feeling. Wife feels we could schedule an appointment with the pediatrician for our satisfaction, but I hesitate to put our sweet and normal girl through it and have it get written down in her medical records in any way.

TIA

Get her assessed professionally. Asperger's if present can be helped by behavioral intervention. If its not felt to be so, also a good outcome.

ojas;408662 We are worried most about the effect screening could have on her young mind, college admissions and future job interviews. Should we get her screened for Asperger's Syndrome or should we read up on it and try to help her ourselves as much as we can? Even if she technically has it, it is probably only borderline is our gut feeling. Wife feels we could schedule an appointment with the pediatrician for our satisfaction, but I hesitate to put our sweet and normal girl through it and have it get written down in her medical records in any way.

TIA

You seem to be worrying... for the wrong reasons. The evaluation is not traumatic to the child in any way. Screening codes are different than diagnosis codes, as far as medical records are concerned. In any case, medical records are private. Has no affect on future college admissions. Infact, a lot of students use/misuse such a diagnosis to their advantage to obtain more time to take a test etc- even the standardised SAT's.
Earlier intervention helps in the sense that kids social skills improve and they are taught sound neutralising techniques etc.

cabo;408730You seem to be worrying... for the wrong reasons. The evaluation is not traumatic to the child in any way. Screening codes are different than diagnosis codes, as far as medical records are concerned. In any case, medical records are private. Has no affect on future college admissions. Infact, a lot of students use/misuse such a diagnosis to their advantage to obtain more time to take a test etc- even the standardised SAT's.
Earlier intervention helps in the sense that kids social skills improve and they are taught sound neutralising techniques etc.

Thank you for the response.

The teacher who recommended that we get her evaluated is the only person who thinks that is needed. We met other subject teachers who taught her at the same time and they disagreed with what their colleague herself recommended. The teacher who recommended has a friend who runs classes for Asperger kids, and the teacher included a brochure about her friend's institute right at our first meeting!

Medical records may be private, but we unfortunately have a pediatrician who likes to gossip and it is a small community.

We have heard from parents of special needs children that schools try to increase the number of students in special needs to get funding.

We hesitate to get her evaluated because not a single person other than this teacher thinks there is anything not normal with our child. She is sought after for playdates. Her friends, our friends and other people like instructors, coaches have nothing but compliments to say about her.

We are also looking at independent agencies that will agree to do the screening test without pediatrician referral and we will pay for it out of our pocket. It is very difficult to think how we will sit down and explain it to the child if we go ahead with the screening.

Dear OP.
When its our child we want the best. and we do not want them to suffer. i can be with you here and understand what you are going through. i read through the details on asperger and it did not seem like too much of a syndrome. more of a behavior issue. each child has some or the other behavior issue.

Please take a deep breadth and do what is right by your daughter with a calm and composed mind.

Good luck!

triveni;408859Dear OP.
When its our child we want the best. and we do not want them to suffer. i can be with you here and understand what you are going through. i read through the details on asperger and it did not seem like too much of a syndrome. more of a behavior issue. each child has some or the other behavior issue.

Please take a deep breadth and do what is right by your daughter with a calm and composed mind.

Good luck!

Triveni, thank you for your kind post. We are trying to decide what is right by our daughter! We cannot go and blindly get her tested based on one teacher’s observations. The pediatrician examines her in detail every year, and never suggested anything like this.

It is a tricky decision. The evaluation in itself is done gently, but there are countless other discussions out there with both sides having reasons that seem correct: Is Asperger’s over diagnosed? Is Aspergers the new ADHD? Should a 10 years old be told of the Asperger’s diagnosis? Will a given student benefit from mentioning having Asperger’s in college application? What is the effect on the child’s mind of being given a label if the child is only a borderline case? Is Asperger’s a myth. http://www.david-boyle.co.uk/systems/aspergers.html Is it under-diagnosed in girls?

It has been recognized as a disability only in the recent years. If our daughter was studying in a school in India, we would not be facing this dilemma. The evaluation criteria http://en.wikipedia.org/wiki/Diagnosis_of_Asperger_syndrome seems unscientific and very subjective. Parents in other boards have shared stories where diagnoses are provisional or borderline as neuropsychologists play it safe.

Thank you once again.

OP,

I didn't want to post first but decided against holding sharing if it helps you even a tiny bit to decide which way to proceed for your kid's case. My post may not dwell well with Doctors or mental health professionals but sometimes I feel we parents do know our kids more than them or the teachers.

My kid who is 10 now was told of the same when the kid was 8 from the teacher (and not from the doctor in annual checkups). We went reluctantly for initial screening as we had not seen alarming behavior that needed urgent evaluation but we went anyway as kid's well-being is paramount to parents but I felt that the screening methods used were the most unscientific to evaluate kid's borderline AS behavior. Yes, my kid had higher obsession than normal for specific patterns then, was relatively weak in language/arts/comprehension, was not super-attentive but definitely was not anti-social and had acceptable social behavior. After the first round of screening, they referred to a neurologist/specialist since the initial screening results were not comprehensive to evaluate strongly this way or that way. After 2 months , we got the appointment and the evaluation(scan,MRI), oral evaluation was borderline again with suggestions for therapy/counseling, school/parent support groups and tons of literature for behavioral remedies. Meanwhile school had asked to pull out the child at specific interval 2 days a week to attend therapy session with kids (with similar evaluation) with a school therapist, so we agreed but after 2-3 sessions, the kid started getting depressed that it was making uncomfortable in front of normal classmates to be pulled out in specific intervals. I had to schedule urgent meeting with the school therapist and the methods discussed were definitely not applicable to my child's profile plus I sat through 3 entire sessions with her and felt she was not qualified/competent enough to make any amends to any kid's behavioral oddities. Group consisted of special need kids along with few borderline evaluations. After that, I went and discussed with school that attendance of my child for coping session was absolutely not required and if they went ahead against my approval, I will complain to higher authorities. They agreed to stop and the rest of the school year was completed without any complaints from school or the class teacher. Based on the urgency to bring school therapist to the picture even when second round of evaluations were going on, I felt it was a scam than a real concern to the child's well being. DSM IV spectrum is so wide that it's unfortunate that system evaluates kids with severe problems that require immediate attention clubbing kids with borderline oddities which the kids may eventually grow out of.

Since then, I usually schedule one session with teacher just when the school year starts to discuss profile of my child, skills/talent and if there are any oddities observed anytime, to discuss with us parents first than school mental health professionals. In 2 years, I haven't heard from school or the new teachers on any need of fresh evaluation. The kid is blossoming as a normal 10 year old.Yes, there are occasional oddities that we notice but I try to ignore and I attribute that to unnecessary attention showered by us parents on growing kids and society's non-tolerance to borderline behavior now than 20-30 years ago as I exhibit some of the traits :). Adults like me are allowed weird behavior even now every now and then but from kids, we expect them to behave within Lakshman Rekha (an imaginary line to control themselves their any idiosyncrasies). AS if at all, IMO will affect them socially in High School or College and till then newer evaluation methods or remedies would have evolved, so I have decided to not think about it now while hoping my kid will not fall in spectrum then either. Time will tell.

First I thought I will send this as PM. Then I decided against it as there was/is nothing wrong with my child and there is nothing to hide. I am and will be proud of child's capabilities and if at all , one teacher and one school system tried to pressure me to brand my kid as odd one, I did not let it happen. My kid's case might not be applicable to your kid but the system in US is not perfect for evaluating wide spectrum of behavior.

Apologies for the long message but hope this post helps in your dilemma.



Added later: With my initial entry and 100+ posts/threads on wide variety of topics in my first 2 weeks, people have formed an opinion on me and seem to have embraced me with a scorn on their face :). Let those feelings continue and please do not treat this post as tear-jerker to gain sympathy ala Hindi movies; RBee is a free spirit and will remain one forever :)

OP,
I understand what you are saying. I have read and heard from friends about school teachers asking for child evaluation when eventually it turns out negative. I personally had refused tests which would label my child as asthamatic. Now every time, I fill out a form which asks whether he has had any conditions previously- jaundice,diabetes,asthma etc, I feel happy about that decision I made years ago. Am I saying that I did not help my child when he was in stress? No, I nebulized him but refused the steroids and the newer drugs. He no longer needs any of those. But I could do this only and only because I really believed he did not have any major issues. Sometimes, I would doubt my conviction- especially after a doctor visit. So I would always take a second opinion- different doctors have different approaches and if I were going to a new-school doctor, I would try and old school one.
I understand what you mean about medical records. It will be a label even if they are confidential. Since no one else has mentioned anything unusual about her, I would wait and watch. Many a times I blame these 'mild' symptoms on the lack of socialising opportunities for kids in this country. I would only say, act on what you believe is true!

I think the focus has to be on the facts- if the oddities are significant enough to affect functioning and if the therapy is needed to address them to help, in any way. A parent has to be very objective and not everyone can be. It is also true that a lot of unnecessary screenings are done for everything.

There seems to be an undue focus and worry on "labeling" and "medical records". Medical records are not written in stone. They evolve and change with everything else. If a child is erroneously called an asthmatic, instead of " reactive airway disease" is not really a big deal. If there are no symptoms in the future, the child does not remain an asthmatic- no matter what the medical records said at one time ! Steroids may be warranted even for reactive airway disease. The use of newer asthma meds depend on the frequency of the symptoms and Asthma classification. It is Ok to get a second opinion or find a doctor that one can trust in- for the childs safety and appropriate treatment. "Labelling "and medical records should be the last cause of concern.

Rbee, Thank you for the sharing your experience so candidly. It will help us and parents who are in a similar situation. In the US, the services available for kids who need them are among the best, but the school system is not always the best. Parents have to do their own research and decide carefully.

Reading your experience, I would like to share what we have learnt so far. Do not take everything a teacher says as true. Teachers tend to be very bossy and behave as though parents are basically stupid. Parents have to do their own extensive research. A screening test for autism related disorders is not like a blood test or eye exam. Children are not as unaware as we would like to think. Teachers are not as tactful and professional as they should be. Teachers gossip about your child to other teachers and even other parents. Parents who volunteer in the classroom get to know details about your child. Teachers spend a lot of time with the child in classroom and parent has no control over what the teacher tells or hints to the child. Do not hesitate to go and speak firmly to the teacher. If you have questions to ask the teacher, do not fix up a meeting. Walk in unannounced or you will get carefully prepared canned responses. Principal will support the teacher.

Listen carefully to your child as they let slip details at unexpected times. Check with the child if teacher has sent them to any special class that other classmates did not go to. Teachers pull out children and send them to such classes conducted by special education aides with time on hands in a year when the school has few special needs children. The biggest lesson we have learnt is that the screening and special education in school is like a vortex. After the first step, we get sucked into it willy-nilly. Do not go for the screening with the mindset that it will only be a simple test and after all we are not committing to anything more. Do worry about your child getting ‘labeled’. The next biggest lesson is a controversial one. Parents of special needs children are the best source of information. But, some of them get some satisfaction from seeing a normal child join the special needs children. Verify the inputs you get from them.

We have still not decided what to do.