How did friends / family take it?

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I have a 4yr old daughter on the spectrum. Diagnosed at 18 months, been through therapy and things are way more manageable now. In the last 3 years, while struggling to understand the diagnosis and various therapies, one of the areas I found very hard to deal with was explaining to my friends and family about the problem. It was almost as if I had to convince them about Autism. She looks fine to me, they would say, give her some time. Whereas time was THE most crucial thing.. not to be wasted at all! In the beginning these absurd attitudes, comments, conversations, really made me confused and crazy especially since my own learning curve about Autism was so steep.

Now that things are so much better, I thought I should work on a small booklet for parents to hand out to their friends to orient them on Autism. It would be like, before jumping to conclusions and advising me, please read this!

I had actually started working on a cartoon strip { http://growingupwithautism.com/ } just for fun, then thought the booklet could be built around it.

My questions to you are -

1. Have you faced similar situations?
2. Do you think a slim, concise well-written guidebook will help parents communicate with their near ones?
3. Can you share your own troubles with friends and families perceptions... things that made you really mad?

pretty much treat me normally, though I do tend to get babied and it annoys the hell out of me

If I was in that situation I think I woulds say 'wait...you do realize autism is a mental condition right? not a deformity?' and then just look at them weirdly for looking at my hypothetical child for physical deformities that somehow indicate autism. But yeah I don't know I will ever have offspring so I don't know that this issue will come up.

This used t irk me to no end. What I do now is say to them and to myself, "You dont live with him" unless you live with the child, you have no idea what its like.

"He seems fine to me" is answered with, "You dont live with him".

What also gets me is when people tell me all kids do the things my son does, and I am certain to an extent they lal do. What they are missing casue they DONT live with us, is the intensity, the severity and the relentlessness of the behaviors or issues. Sure, a lot of boys are obsessed with video games, but I have yet to see another 6 1/2 yo have a 30 minute meltdown, kicking screaming cyring hyperventelating over the fact that his freind doesnt want to verse him on the DS anyomre, being that they did it for an hour already. And then spend the next hour begging, pleading, yelling, crying and trying to fiorce that kid to play the game with him again. That is just one examle of course!

Poeple will say things, and I have to let it roll off my back and seriously, they dont live with our children...then have NO IDEA!! !

I like that. I'm going to have to try that one. I have gotten that a lot, the poo-pooing. "Oh, our daughter did that too! That's normal." What I want to say sometimes is, "Oh! Maybe you should have her evaluated . . . " (insert wicked laugh). Anyway, I think 'you don't live with him' is a much better answer. The thing is, when pressed, they will say their child did it 'once or twice' kind of thing. Again, as MMJMOM said it is the frequency and intensity . . . and the NUMBER of idiosyncrasies that matter. If my son ONLY had an issue with food sensitivities, I wouldn't have been so concerned. We'd work with that one issue. It's the food sensitivities, plus the stimming, plus the lack of responding to his name/questions, plus the other sensory sensitivities, the rigidity, the catastrophic thinking, the meltdown every time we wash his hair, the dysgraphia . . . all those things combined are what are a part of his ASD. People hear one little issue and poo-poo it and they don't know the whole story. My rant.

As MMJMOM said, though, it is best to let it roll off your back. While a 'handout' is a nice idea, I think those whose ears are not open will not hear. So, I'm not saying don't try, but realize there may not be much you can do to change someone's mind. It will have to come in it's own time. Or ask them to babysit your child on one of your child's 'off' days. That'll do it.
One of my son's church kindergarten teachers (who mastered in psychology) simply thought my son was insecure, didn't like her, clingy, sensitive. When I told her ASD, she had a huge 'AHA' moment. And she was actually quite relieved to hear that. And supportive. But that's not going to be everyone.

As far as family, my mother has been super supportive BUT she is also not in the same country. She hasn't seen our son for a year and a half. I think she is imagining our son as more obvious/extreme in his autism. I have a feeling she's going to visit and just think he is spoiled or stubborn and that we got it wrong. We'll see. At least she is doing some reading on Aspergers.

I let me sister-in-law know and she confided that she has actually been concerned about my nephew/niece for a few months now. I told my mother that and she dismissed my sister-in-law as overly-concerned, she needs to wait it out, and that the kids are just willful/stubborn. All this and my niece is 2 1/2 and non-verbal! Hmmmm.

I do get a lot of that 'wait and see' attitude from people myself. They think everything just works itself out in time. But they don't think about the fact that the earlier you intervene the better! And if the interventions are working . . . well, isn't that some kind of proof?

I like the idea of a cartoon booklet, particularly what you did in 1f and 1g, which show examples of how the child is different from typical kids.

Our extended family accepted the news more readily than we expected. They live overseas and so don't see DS very often.

The problem is universal. I spoke to many families across cultures and almost all have similar issues. And its the last thing we need to hear while going through the turmoil of understanding whats going on... again this is specific to the first few years of the child's life.

with us, apart from the immediate family we didn't feel the need to be telling anyone and everyone. I did try with friends but I hate having to explain it to ignorant people who in-spite of calling themselves educated look down as such things as if we or the kid have committed a sin to end up in this situation. but the immediate family has been very supportive, we do get the "she will grow out of this with age" and "she looks fine to me" comments, but we know they are saying it just to make us feel better and sometimes these sort of comments do help even though deep down we know better.

Very true... also the way I am looking at is, to improve social skills and to understand people, there has to be a social circle that is aware and understanding. In the absence of stimulus from people around and I mean in natural settings and not group therapies etc, I found the need to have at least a few friends or family members who should be aware of how to communicate with the child. Meaning if they ask a question and the child seemingly ignores, they let go. If everyone close to the child know a little bit more on what is to be done, and make that little extra effort to get a response, the child will benefit a great deal in the long run, no? In my case its been hard to provide that much meaningful stimulus and variations of it all day long. Its fun to be playing different parts but at times exhausting