I'm just writing about this because the subject seems to be coming up in the forums lately. For me, it was a comfort and a relief to finally be diagnosed in my late twenties - to know what was wrong and to have a name to put to it. I think if a child obviously needs help in some area, such as speech training, then fine - provide them with it. Having said that, however, I'm often disappointed that we seem so intolerant of differences, and so inclined to portray them as something 'negative'. I have several friends who are disabled or have what are sometimes called 'defects' - I appreciate them for their other qualities, and hardly notice their 'handicaps' anymore. Sometimes, I can't believe some of the descriptions and labels people have been given by their doctors - I think it's gone a bit overboard. Patients are human beings, first and foremost.
I never had speech therapy as a child - though I could probably still benefit from it. At this stage of my life, however, I'm no longer bothered about it - I've learnt to live with it and the people who matter most in my life accept me as I am - though maybe it could have made some things easier when I was younger. I saw child specialists in my first six years - but the follow up intervention, advice and information my parents received was minimal. I think my parents were told a bit about Autism at the time but either didn't understand it or else were very fearful of it and concerned. Probably a bit of both. And so it never came up again.
I think that parents, when their child is first diagnosed, often go through a process that's comparable with the grief process - there's shock, fear, denial, confusion, etc, before they come to their own acceptance. I can totally understand it. Though of course I guess everyone's reaction is different. Sometimes, you can't fix everything, but it seems you can try to find the most 'workable' balance between intervention and encouraging/allowing independence. I feel like I have a mix in my own life these days that I'm the most happy and comfortable with. I appreciate more than ever the difficulties my parents went through and anyone who deals with it has my respect and admiration.
Great post! I agree with you. A lot of horrible words have been used to describe people with disabilities, and it is unfair.
I am 41 years old, and a formal diagnosis at this point would probably not be useful, but I feel I have a lot of the traits of Asperger syndrome. I was misdiagnosed as hyperactive as a child, a diagnosis I don't believe fits. I don't want a formal diagnosis if it is used as an excuse for me not to pursue my dreams. I just have to deal with this by myself.
As for 'labelling' goes, it has some positive and negative effects. Said before, you have the ridicule, the over-excessive labelling, and the down right horrendous. But then of coarse you have the help, and the services and the explanation.
For me, I wish I was labelled, or diagnosed, a lot sooner (by professionals that is). When I was two I was labeled as a "communication delay", but nothing further. With that, I missed out on a lot of services I could have had, that could have helped me today. Instead, I was labelled "Autistic" In my teens, and seemingly too late for a lot of given services (I found out that there is no such thing as "Autistic Adults", so services are minute.)
I am mom to a four year old boy diagnosed with an ASD at 26 months. I have always been pretty open with people about his diagnosis. I've been pondering this a lot lately because he is getting older, will be starting preschool soon (in a "typical" school.), and is progressing developmentally by leaps and bounds. People almost never think anything is "wrong" with him, and I've recently overheard people say that he must be shy, he's quiet, etc. So, suddenly, I'm thinking maybe I'm making a mistake being so open about this. I even have a bumper sticker that says, "I love a child with autism." I'm wondering if I should keep things more private. Part of me wants the world to understand autism instead of shrinking from the word, which has often been my experience. But, I'm afraid I might be making my son a poster child at the expense of his autonomy and privacy.
Reading your VERY helpful posts is interesting. Do you folks think it would/would have help(ed) you to have had your diagnosis (if you'd had one growing up) known to the people you went to school with and live(d) near? Or do you think it is only beneficial as personal knowledge? Does that make sense?
By the way, I love reading your posts. As a parent trying to figure out the best way to clear the path for my amazing son, your insights have been more helpful than almost anything else I've come accross these past two years. You each have shown yourselves to be incredibly insightful, interesting, and empathetic people. It gives me reassurance of what my son is capable of in his life. Thanks.
Reading your VERY helpful posts is interesting. Do you folks think it would/would have help(ed) you to have had your diagnosis (if you'd had one growing up) known to the people you went to school with and live(d) near? Or do you think it is only beneficial as personal knowledge? Does that make sense?
Makes perfect sense, and I can see your dilemma. For me, it would have been a lot easier if my school had that diagnosis. I would have been allegeable for special education, in the smaller slower classes that I truely needed; as well as understanding from others because I was practically mute (not nonverbal, but selectively mute).
But this depends on each person. Another child may actually benefit from only the school knowing, and not having the diagnosis out in the open. Especially if that child doesn't need the larger or open services.
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