Is having kids assessed exposing them to stigma?

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I was accused of stigmatizing my kids because I was reading a book called: Parent's Guide to Children with Asperger's. My kids and I are not diagnosed, but I would like to pursue assessment. I'm certain I have this, I'm not so sure about them. They have been struggling in school and I would like to have them assessed as soon as possible. My suggestion was met with the stigma argument--I stigmatized them for reading the book and I will make it worse if I have them assessed. I'm slowly processing this, and unfortunately starting to think I married a caveman--but still am desperate to find an optimal solution for my kids.

Does having your kids assessed stigmatize them? Have you been there? Knowing what you know now...what things do you think I should I consider?

I think their differences stigmatize them, not having an assessment of those differences. A diagnosis does not change who a person is, it just gives a name to those differences. IMO, not seeking a diagnosis and getting the services needed will result in other children singling a child out for those differences even more than if they got the help they needed to fit into society a bit better.

It could stigmatize them. It will stigmatize them if they're diagnosed, and somehow the word gets out to all in the other kids in the school. This is why a student's file is kept private, and even positive things like having a high IQ are kept private, because even positive things can have a negative impact on how a student is treated by his/her peers.

A doctor once told me "You're doing great, and you'll find a place. There's no point in putting negative medical labels on people who are high functioning." A doctor may weigh the ethics of labeling someone and decide not to diagnose if the stigma and consequences to one's professional life may outweigh the benefits. Diagnosis may also have a negative impact on how the parents treat the child, and in rare cases a parent may kill the child.

Not unless you consider actually having them diagnosed to be an even worse stigma, in which case I am insulted.

Last edited by dyingofpoetry on 30 Jul 2010, 1:20 pm, edited 1 time in total.

^^THIS^^

As of right now, few people even know what AS is. I would avoid using the term Ass Burgers if you want to avoid ridicule. The correct pronunciation is Ahz-pair-gur, but all the twits in the media say it wrong every time.

Now that I think about it, I guess that's what I was feeling, too. As if what I have going on with me, the stuff inside that I have worked so hard to shove down and cover up and ignore--as if that part of me was something to be embarrassed about.

I guess I was insulted that he thought this was something that needed to be hidden or ignored. Denial of the facts is one thing, but 'stigma'--that indicates a very nasty bit of baggage, doesn't it?

We should be proud of ourselves and who we are. No matter what cards we are dealt in life, we can use them to the best advantage to succeed and do great things.

Wise statement. An assessment that puts a label on what everyone kind of already knows shouldn't cause an issue.

But, I understand the concern. It was a big question for me in signing off on my son's school assessment and entering the IEP process, and something you should ask the school, among others. What types of stigma it may or may not create will vary a lot by area and attitude, and that is difficult to assess without asking a lot of questions. The most surprising answer I got was from our school principal, who told me how many parents in our county are trying to get a label of AS so that their kids will have more time on college entrance testing. Wow. I can't imagine putting a label on a child in the hopes of bumping an SAT score and increasing the odds of college admission, but apparently some ambitious parents do. Which also means in certain circles AS isn't a stigma at all, or those parents wouldn't be willing to make the trade off. I think the community I live in generally associates AS with Silicon Valley and out-of-the-box thinking, as well as a lack of social skills; not exactly accurate, either, but at least it assumes really strong positives that people are more than willing to accept. Kids may not be embracing it (quirky is never going to be middle school style), but adults are.

In the end we settled for a school use label that allows us to get our son the accommodations he needs while in this school district, but will allow us to reassess the need and desire for the official label when he graduates from high school or if we move. I really like the idea of him having a say in what follows him after the age 18, even though he has embraced the label ever since we first got it. There remain open questions as to what medical insurance and employers will do with it, and so on. Why marry us to something today that may not make sense tomorrow if there is no current and tangible need to?

All that said, if a label will help your children thrive in school, you get it. Whether or not it will help will depend on what your school has to offer and how they will treat your kids because of the label. That is what is of concern today, and where a parent's energy is focused. If your kids are in middle school or high school, they absolutely must be included in the decision. In elementary school, they should be informed and hopefully made comfortable with it.

For yourself - it's your decision. It's your label; only you have a right to decide if you want it formalized, or are happy keeping it a theory for yourself.

As for reading the book and saying that creates a stigma - ridiculous. The pursuit of information should never create a stigma. If it does, you have to think about where you live and who you interact with and how healthy they are for your life.

I wouldn't think the assessment itself does much. Being pulled out for services, or being in a special day class, certainly may carry a stigma. But who doesn't know there's something weird about my son already? We are generally quite "out", thinking it more important to seek understanding and acceptance than to try and hide his diagnosis.

the only thing that will stigmatize them is ignorance, as in the willful ignorance from people who dont understand your children.

we didnt even consider this much when seeking to get our son diagnosed. we arent really concerned with other peoples opinions about our family. what we are concerned with is getting our son services in school to make him more successful, in learning strategies to cope with his autistic tendencies to make our home life less stressful, and in being able to help him understand himself as he grows. having an accurate diagnosis helps all those goals.

i have found that the diagnosis has been a relief in a way i hadnt considered as well. ive never been one to worry about what others think,, but i do admit that the looks used to bug me. you know, when you are shopping or something and your child is, as we call it, "having an autistic moment", and people start to stare. it used to bother me a bit, and would even make me feel like a failure as a parent for being unable to control my child. now, the looks dont bother me in the least, and ive given up the idea that his behavior is a total reflection of my parenting.

My son was diagnosed last year at the age of 7. I didn't tell him what the various assessments were for, even though I was sure he would be diagnosed as Asperger's I didn't want to tell him until it was a certainty. I told him about it a few months later when it came up naturally in conversation, and he is very open about his diagnosis. He has told the children in his class, and pretty much everyone he comes into any significant contact with. He is noticeably "odd" in his behaviours and mannerisms, so the diagnosis provides an explanation.

His father and I had already separated before he was referred for assessment after the school raised concerns, specifically about his head-banging, and his father was very much opposed to the whole idea and did tell me that a label like that would stigmatise him and have an adverse effect on his education and life chances. I feel, and I'm sure that my son would agree, that that has absolutely not been the case. The diagnosis has meant access to services and assistance that would not otherwise have been available, and as I intend to move for work in the next year it means that he will continue to be able to access those services in another area.

My son has told me that he always knew he was "weird" and that now he knows why. Recently we have spoken about some of the things he struggles with and he has asked if that is part of the AS, which it is, and he is satisfied with that. It means that he doesn't feel that he is failing or that he should feel bad about not being able to do certain things which other children his age can do.

The attitude of the various professionals my son is in contact with is that the diagnosis, or label, serves as a tool which points him towards help and that help is then tailored to him as an individual with his own very particular needs.

I was in my thirties before the diagnosis even existed. I can tell you with certainty that what stigmatizes the child, particularly in the eyes of his peers, is the AS, not the label. I had no label - so I was "weird", not autistic. To the teachers, I was a "slacker" who "doesn't work up to his potential".

I would advise the assessment. If they aren't AS, then you'll know. If they are, then accommodations can be reached, and they can be defended from at least some of the bullying, which is better than nothing, believe me.

Just an update. My husband still isn't on board, but I got some time alone with the kids today and explained my Asperger's to them--gently and thoroughly and tried to get them to understand what's happening inside me when I shut down or go on sensory overload. They had some good questions, and volunteered the two bits of information I think require me to get them assessed: this tends to fun in families and they both have shown some signs of having it (and it may be the key to these two gifted children struggling in school).

I took the advice from this thread very seriously and I explained AS as a physical issue, wiring that works a different way--nothing scary or anything to be embarrassed about, it just takes some different ways to approach problems and some coping mechanisms to deal with the rest of the world. We talked about how some want to keep the diagnosis private or fear even getting diagnosed and I pointed out that people bully and tease because you are different, and that will be true whether there is ever a name for it or not (thank you--this point was made several times--and the kids agreed with you all). I have sent them off to process this, and we will talk about it again soon, but my guess is that they will agree to assessment and even think it is a good idea.

I can't thank you all enough for all the help and advice. It really helped me lay aside the emotional reaction to the baggage between my husband and I so that I could find a way to look out for my kids. They understand me better, at least, and if there was any stigma about Asperger's in their heads before, I think I have given the issue a lot healthier approach. Thank you, thank you, thank you.

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My view is along the lines of I don't care what a person calls a lifelong neurological challenge, I only care whether I can find something which helps a little (not a cure).

I have very mixed feelings on assessments especially when an assessment goes off in a wrong direction and results in a misdiagnosis.

A few clinicians (my view) are very careful and try to provide a correct diagnosis; too many clinicians don't care and will resort to giving a (false) diagnosis to a child which the insurance company will automically process and send a full payment to the clinic for. So, in some cases, it's immediate money to a clinic for a standardized, (false, fake) diagnosis vs any desire to give a correct diagnosis to the customer.

In my view, some kinds (not all) of neurological challenges are pretty close to the idea of invisible, almost invisible Cerebral Palsy and an associated condition(s).

http://www.associatedconditionsofcerebralpalsy.com/

A correct diagnosis is a good thing and not a stigma. An incorrect, inaccurate, or false diagnosis is a bad thing which wastes time, wastes money, and leads to disillusionment with the persons paid to provide a correct diagnosis yet dropped the football/caused the stigma/wasted time/wasted money of a wrong diagnosis.

http://www.nlm.nih.gov/medlineplus/
http://www.wrongdiagnosis.com/

Also, even with a correct diagnosis there is zero guarantee of a great solution/easy solution at all.

In a lot of cases, once a correct diagnosis is made, that's it. Next customer please. So the customer is left to sink or swim since no one has any good answers beyond a correct label/description.

The process of going from a correct diagnosis to finding something which helps a little often is not an immediate process at all. It can take time: weeks, months, even years.

That's my understanding.

This is the only problem that I can see for an autistic person. The idea that naming a person's neurology autism equates something negative. It is what it is, it's not inherently negative. But people make it negative and that is the problem.

The secretiveness keeps the public (with no personal relationship to autism) ignorant about the autism spectrum, what it is and what it looks like.

Autism needs to be assimilated in the mind of the culture at large as one variant of being and not something negative, terrible, a disease, a negative experience.

Even the damn doctors are completely ignorant about what it means to have autism.

It seems to me, if the child was blind or had no legs, there would not even be a discussion of this topic.

As I sat in my son's IEP meeting, with the Principal and all the others, after he was actually diagnosed, they were against labeling him. I was angry. Why? Because they for what ever reason did not think he need additional help.

I stuck to my guns, with the letter from his physician in my hand and said, "He has Aspergers."

Slowly, he's improved.

Aspergers is not a death sentence. It's the way they are - period. Accept it.

My son is awesome and I would NOT trade him in for another.