Is having kids assessed exposing them to stigma?

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I remember the principal asked me did I really want that (Asperger diagnosis) in her records "following her around". WTF? Is what I thought. I mean, if she has it, she has it. Why hide it? I pushed for the eval and they completed it and agreed that she showed signs of an autistic spectrum disorder and that it was likely Asperger's. I'd like a concrete diagnosis, though. I want a yes or a no, not a "likely". So I may have her independently evaluated. My daughter thought it was cool to have Asperger's when I explained that many people think some of the smartest and most influential people in history may have had it also. I explained that it made her think differently than others and that that was something that could be used as a gift. Her eyes got so big when I told her that some people think Einstein may have had Asperger's. She said "You mean I could be a great scientist?" I told her if she wanted something and put her mind to it, she could be anything she wanted. Last I checked her preferred career choice is Artist first, then Scientist if she can't make enough money with her art.

I suspect that principal's motives. It may be an effort to keep from spending money on the services your child needs. Anyway, in my experience the mealymouthed diagnosis and refusal of services tend to go together. We've had much more success since insisting that my son's autism diagnosis be acknowledged on his IEP.

Yes, yes, yes!! !

If there's no identification of a child's needs, there's no requirement to meet those needs. The longer they drag their feet, the longer they can delay providing the services, so they'll "offer" to do things "informally" instead of doing it properly, so you can't enforce your child's rights. They'll pretend they're looking out for your child's interests, but they aren't - they are doing what is easiest for them.

I wasn't diagnosed until my 30's, all I can say is that I wish I had KNOWN.

I tried so hard for years to "be like everyone else", and wasted alot of time persecuting myself for the failures when I could have been celebrating the triumphs.

With the knowledge finally came acceptance...acceptance of myself. I wasn't angry because someone told me I was "different", I had already guessed that part, I was just angry I had to wait 30 some years for someone to fill in the blanks and tell me "why" and "how".

No. A diagnosis does not and cannot stigmatize a person. People can and do stigmatize other people based on differences. You can choose to keep the diagnosis entirely secret, and your child may still be stigmatized as "the weird kid."

A diagnosis is a tool, it is up to you how to use it.

I don't know know about stigma or any of that. I've been weird for years, and am just now coming to terms with the fact that there's a name for it, and things I can do to help myself that actually work, and that my child likely has the same thing, and again I'm finding things that help him. I can't help but think when we're having a good day that I'm imagining it. I wonder sometimes if it's because I'm wired the same way as him, because his father and granny have said there is was something off with him and said he was adhd and I denied it. I said no he's not, because you cannot properly dx adhd until a kid is over the age of 6. He was 3 at the time. I would like to know I'm not imagining this. I don't think I am because all the advice on the boards are actually working, and it's like I have a different child now that I am able to reach him, and help him. My voice isn't raw from yelling anymore. It makes me giddy that we can have an exchange and I don't have to leave him at home because he can't stop acting out in public. A dx would help, and I wouldn't feel like I'm crying wolf and don't really belong here and am wasting everyone's time. (ask me again on a bad day and I probably won't feel this way)

i think this is a really big thing to consider when it comes to deciding on diagnosis for our kids. my SO isnt officially diagnosed, but after our sons diagnosis this year we figured out his dad is autistic too. and he has expressed the same anger you are talking about. in his case, he was sent to either psychiatrists or psychologists multiple times when he was a child, stemming from issues in school. none of them ever picked up on his autistic traits.

one of my main thoughts in pursuing diagnosis for our son was in knowing how to help him and how to help him understand himself. we always knew he was different and have made accomodations for him for years. by time he started the evaluations, we were 95% sure it was autism in some form. having that confirmed with an official diagnosis gave us more ideas and tools to use, and also made it easier to get services in school for him (easier, not easy, as this is an ongoing battle for us).

i would rather have a child who gets teased for special ed help in school, understands how and why he is different, and learns to live with himself than a child who gets teased for being weird, doesnt understand why or how he is different, and learns to hate himself or the world for it.

Exactly. She even questioned the need for a 504 in the last meeting but the psychologist and a couple other people in the meeting told her that it was something that she needed. It made me mad to think that instead of my daughters needs being her first and foremost concern, it was her financial bottom line and laziness that were foremost.

I posted this on my blog recently and was honoured when The Thinking Persons Guide to Autism decided to publish it. Banishing the fear of stigma can only be accomplished if enough of us take the first stand, and refusing assessments because of a fear of stigma is a step in a very backward direction. It is a subject I feel very strongly about:

Be The Change: How to Shift Autism into the Mainstream

I have a neighbour who can’t say “autism”.

Both of us having two young kids, we had a casual chat on the lawn the other day as neighbours often do, about the usual stuff. Except of course, the “usual stuff” for parents like us will strike others as highly unusual. It's hard to make small talk about our kids without autism finding its way into the conversation. It used to make me uncomfortable; it can be awkward to find succinct ways to weave such a complex situation into an informal chat. But I no longer let society's discomfort with autism deter me from talking about “it”. “It's” part of who my son is, and indeed has become part of who I am. If she gets to talk about her daughter's ballet class, then dammit all, I get to talk about my son's karate class - and how it's helped him with the more challenging aspects of Aspergers.

I must have hit at least three occasions in our conversation where I tried to say “autism” but she saw it coming, and cut me off at every pass. She replaced it with “I see” – where I said “I’ve been homeschooling because the school wasn’t prepared to work with Simon’s au-“, “I see, I see” she interjected hastily. She also replaced it with “oh yeah” as in “We don’t feel Simon needs to be cured of his au-” “Oh yeah, yeah” she interrupted me nervously. Awkward silences and fidgeting ensued.

I’ve read many opinions on who should be told about your child’s autism, and how you should tell them. I’ve seen a range of positions from experts, parents, and autists. The prevailing wisdom, including from many of the people I most admire, is that you should be choosy and cautious about who you tell, discreet in how you share the information, and that your child should have some level of control (some say all the control) over who is told. Generally, this position comes from a place of concern and respect for a child’s right to privacy.

This made good sense to me initially. It sounds just like the middle of the road liberal approach I would normally be drawn to.

But I am finding myself with each passing day, becoming more radical in my beliefs about the need for complete transparency with an autism diagnosis. The need for respect, awareness, acceptance, and pride. And I just can’t see our kids getting any of those from a society that can’t bring itself to say “autism”.

Recently I was torn about a decision involving my son’s old school buddies, and how they don't know he's autistic. I struggled with the question: do I really want them to? We don't want our children stigmatized by the label. We don’t want them to be crucified on a daily basis, or limited in their future, because of that word, “autism”. None of us want those things for our children.

But here’s the thing: until enough of us stand up and say “my child is autistic” and say it wrapped in a context replete with love, respect, and adoration and devoid of shame, sorrow, or fear – until enough of us find the courage to be at the forefront of that movement, then we sentence our children – all of our children – to exactly that which we fear most. Isolation, marginalization, stigma. We foster it with our own fear. We perpetuate the cycle because we are not courageous enough to be the one to break it.

Yes, the risks with transparency are real. By “outing” your child you risk a label that currently carries a ton of baggage. You may have more battles – or you may have less. Your child may benefit from the services they receive – or they may face ostracism from the stigma of the label that brings those services.

Nothing is certain except this one, unavoidable truth: society will only stop fearing Autism when we do. It will only stop stigmatizing our children when we wield a sword of awareness against it. How can we expect society to recognize and respect our children’s autistic differences when so many of us are still in the closet about them?

Every misunderstood, marginalized, oppressed group of people throughout history has faced this same challenge. Stereotypes, fear, and pity suffocated them, demoralized them. The reality is that nothing changes, until enough people join the rebellion. And for those at the forefront of the movement, they risk losing the security of their child’s relative neurological anonymity, in order to secure a better future for our children collectively.

Ultimately, society cannot free our children from a cage of stigma. Only we can do that. We need to reject the 'don't ask, don't tell' approach of past generations and join a movement that shifts Autism into the mainstream. And the only real way to do that - to achieve complete equality, complete awareness, and complete respect for our kids - is to be brave enough to say “autism" without the slightest hint of regret in our voice.

We need to say it first. We need to say it loud. We need to say it often.

It’s the only way.

Caitlin,

Congratulations on being published on The Thinking Person's Guide to Autism! That is very exciting! Your article is excellent - very well stated. While I agree with what you say, I have found that as my son got older, I have had to relinquish my role as the person who decides who should be told that he has Asperger's - it's really up to him (except, of course, as relates to service providers, teachers, etc.). He tells most friends, and is very comfortable with himself being on the spectrum.

Thanks Jat. As a writer who abandoned the art in favour of a "real job" nearly two decades ago, I am happy to finally be returning to my true love

I agree, as a child matures into a young adult and adulthood, the decision naturally rests with them. And I would wager that kids grow up to be comfortable with themselves as Autistic, and comfortable telling people, when they are raised in a family that has created that kind of accepting, no-shame, no-secrets environment.