Ignorant People

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As I stated in my other post, my 10 year old is newly diagnosed PDD-NOS. Everything with my son has always been extremely difficult since my son was a toddler (as the parent and as the child). Shoes, socks, pants, verbal instruction, directions, emotional connections, rages, outbursts, bizarre behavior, etc...yet he always behaved well in public (until the past year or so).

So, I am finding the reaction that people have to the diagnosis to be particularly annoying. I have struggled SO much and they know it, yet the reaction is "Oh, well he never had a hard time when he was with me" or "when I took him to the park 4 years ago he didn't do that" or "Oh, that's practically nothing. It is not like he has autism".

I know I can't make people understand. I have tried educating them a bit, but they still hold on to their thoughts - oh, it's not true. oh, it's no big deal.

It IS a big deal and it IS extremely hard to manage in our situation.

Any suggestions on how to respond or deal with these people?

First of all, you can tell them, that you don't wish for pity, for you or your son, but you can also tell it like it is, in the nicest way, that you can.

Educating people about autism spectrum disorders is the ultimate goal, in order to create a better world for our sons and daughters and everyone on the spectrum. I know its frustrating, but its the only way.

You will have to keep reaching out to people that understand and that will be a support to you. For the ones who blow it off, you will just have to not worry about what they think, and decide whether it is important for you to maintain your relationship with them. Autism is so complex, unless they want to really understand it, then there is no use trying. If the ones that are not taking it that seriously are family members, then I guess you can't totally write them off, but you can just choose to ignore their ignorance or lack of understanding and move on. It is the only way that you will keep your own sanity and your focus clear on helping your son. This may sound harsh, but it is the reality of it. Over time, you will find the people that you will need to encourage and support you. Wrong Planet is a very good outlet, and a place to come to vent when you just have no one else to talk to about it. Hang in there!

Welcome to the world of the invisible handicap, where if others can't SEE it, it isn't real.

"You have a disability? Where? You don't have a hump, a clubfoot or a missing appendage - there's no cane, wheelchair, no crutches, no brace, no oxygen canister. You don't lisp, drool or dirty yourself - hell, you've even got a decent vocabulary, how could you be disabled? You're just one of those whining fakers, claiming you're disabled for benefits or sympathy. Worthless Slacker."

After awhile you can even recognize the ones who won't say it out loud in front of you, but the thought shows clearly on their face - almost as if they were just about to say it and had to strain to hold it back. As you've already seen, many of those will be people you thought were your friends.

You think its annoying to you now, just imagine - your son's going to have to live with that attitude his entire life. That, and the one that goes:

"What the f**k is wrong with you!? Everybody else is doing it just fine, now get in there and do what they're doing, exactly as they're doing it, OR ELSE!

When we were going to visit my family a month ago, I gave a list of the quirky things that my son does, explained that I was uninterested in being preached to about his eating habits and offered up some of his triggers for meltdown (he has very few thank God). I never mentioned autism (and yes, most everyone is aware we have that label). This worked out really well for me and my family was able to be supportive and sympathetic.

People get really stuck on words and labels. Sometimes it's better not to use them. All of our kids have different triggers, likes and tolerance levels. Addressing in that way often makes it easier for people to digest.

I agree with most of what you wrote Countess, but not with the avoidance of using labels. If we do not insist on complete acceptance of the our kids for who and what they are (autistic), a complete lack of fear and stigma for that label, and if we continue to hide from the word "autism", we do all our children a tremendous disservice. I know it can be easier in some situations, but easier is not always better.

Caitlin
www.welcome-to-normal.com

I respect what you're saying.

It's not so much about avoidance to me as it is like induction. Sometimes it takes people a while to come to terms with the word Autism. I know I struggled with it. In the mean time, it is important that the child is able to be loved and understood and respected in his immediate environment and by the people who will support him through his life. It's like establishing priorities - get the affected person what they need and then address what affects him. And everyone on my side of the family (and some on DH's) at this point are aware that Autism is what causes him to be so quirky and different. And they're completely OK with it. It was just easier to illustrate that Autism isn't what people seem to think it is. When we started down this path, I also contended with people's arguments. It was impossible to conceive that he was on the spectrum. He was reading words at 28 months and could count to 23. He was far too intelligent to be Autistic.

All I did was work to dispel the myth with my family and allow them to understand that it's not what they think , and my child is absolutely wonderful (and has Autism too). To me, I think it is far more damaging that people behave oddly around him because of a word or misconception about it.

The feeling is mutual Countess (I respect what you're saying too). I completely agree with your induction explanation. I misunderstood your post to mean that you just won't use "that word". But if this is a process for your family, and the process is making your child feel more loved and accepted, and it will ultimately lead to more comfort with "that word" over time, then that sounds like a very wise approach.

I throw the word Autism around with wreckless abandon now, possibly just a little because it annoys my mother in law so much. She feels Simon (who began speaking at age 6 months and engaged in adult conversations by age 2 years) got his Autism because I fed him too many avocados.

Yup, you read that right. Avodados.

You can see I have an uphill battle ahead of me in the awareness and education department

I re-read my post and I wasn't very clear. I can understand why you felt the way you did about it.



Let's give her an a+ for originality! That has to be the most insane thing I've heard recently. How unfortunate. Where did she get that from?

Thanks for all the input. I just needed reinforcement. Some of the posts made me laugh too.

Avocados? really!! !!. that is insane!! !!

Caitlin, I just wanted to throw one thing in, I am not ashamed of the word autism, but right now my son is very prone to going around and throwing out words that he has heard. He will use them out of context, and he has no clue at this point what autism is. So I am very careful around him using "that word" I will wait until I feel that he is more able to understand it before I start incorporating it into our vocabulary. But, I do understand what you are saying.

Tend to make a mental note of it and ignore it.

Speaking of kids thats one thing I think is actually easier with a boy like mine, he is obviously different; doesn't talk and looks dreamily at things while doing weird finger flicking stuff with his hands, whereas our friends have an Aspie boy just a little older who is highly verbal so as a result comes across to people who aren't familiar with ASD as strange or rude. I think that might be harder for the parents in some ways.