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.)

SGH

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.

SGH

ReblB
we are actually going to add a provision to our son's IEP that if any child asks about isaac that they are explained to as best as possible that he autistic and what that means. our son is going to be receiving ABA in his pre-k class and is severely autistic so there is no hiding it and we are not ashamed of it so why call something silly like "oh, isaac is just 'special', that's why he acts that way" i dont want the other kids to wonder why he is special and they arent... we he doesnt do the same things that they do or why he goes to a different room if he is having a hard day. i feel that if he is going to be going to school with them for the next 14 or more years then the students should be given enough respect to be told the truth about the odd peer:) we think (and hope) that if they have knowledge that they will be better able to understand isaac instead of just be afraid of him because he is different. ofcourse our son will never be able to "blend" :) so this is what we think will be best for him.

and as far as labeling goes... it was a blessing for us! 3 and half years of extreme chaos and destruction and tantrums and being non-verbal all suddenly was explained away and we were given direction in where to go. so for us labels = WHOOO HOOO!:D

although we were not as excited about getting the MR label tacked on but at this time we feel its a decent representation of his ability to perform in an educational setting (whew! its hard to be all p.c. all of the time;)) anyhow we knew it was coming so we were prepared. his i.q. is not testable at this time so what are you going to do:)

With teens on the spectrum, esp. high functioning ones, insight into one's differences is very helpful to working on developing skills & compensations that will facilitate success as an independent adult in the real world.

Part of insight development is acceptance of the "label," both by self & by family. But the bigger part of insight development is moving beyond the label. It's a process not uncommonly accompanied by a stage of grief.

My son has a dx/label of PDD-NOS, and while that may explain a few of his challenges, the label is not who he is. He is a gifted, bright, considerate, healthy, at times mischievious teenager. A wonderful helpful part of our family & extended family. We've worked both to help him develop insight as well as to mitigate the damage of labelling.

We try to keep the label in perspective. Some people have moles on their faces; our son has the equivalent of a mole or wart on his psych/social functioning. Big deal. Who's perfect?

My son John was diagnosed with autism at 4 and a half years old. He is a loveing child.We see him not as handicap but that he has feelings and can show love and effection.No mater what society wants to lable him he is just John our son.

ReblB
we are actually going to add a provision to our son's IEP that if any child asks about isaac that they are explained to as best as possible that he autistic and what that means. our son is going to be receiving ABA in his pre-k class and is severely autistic so there is no hiding it and we are not ashamed of it so why call something silly like "oh, isaac is just 'special', that's why he acts that way" i dont want the other kids to wonder why he is special and they arent... we he doesnt do the same things that they do or why he goes to a different room if he is having a hard day. i feel that if he is going to be going to school with them for the next 14 or more years then the students should be given enough respect to be told the truth about the odd peer:) we think (and hope) that if they have knowledge that they will be better able to understand isaac instead of just be afraid of him because he is different. ofcourse our son will never be able to "blend" :) so this is what we think will be best for him.

and as far as labeling goes... it was a blessing for us! 3 and half years of extreme chaos and destruction and tantrums and being non-verbal all suddenly was explained away and we were given direction in where to go. so for us labels = WHOOO HOOO!:D

although we were not as excited about getting the MR label tacked on but at this time we feel its a decent representation of his ability to perform in an educational setting (whew! its hard to be all p.c. all of the time;)) anyhow we knew it was coming so we were prepared. his i.q. is not testable at this time so what are you going to do:)

My son John had aba therapy but it did not work for him the man that was doing the therapy made john worse. Just be carefull were aba is done. My son went to biting and slapping himself real bad when they used aba on him. The man wanted the therapists to take turn holding him and that was a disaster.

My son John had aba therapy but it did not work for him the man that was doing the therapy made john worse. Just be carefull were aba is done. My son went to biting and slapping himself real bad when they used aba on him. The man wanted the therapists to take turn holding him and that was a disaster.


we are very fortunate with our ABA around here... i am pretty sure that the woman who supervises it is high functioning autistic herself.:) its funny she was here to supervise the instructor with isaac this past week and isaac tried to get her to pick him up and she literally backed away from him:) i tried not to laugh:) no, there is no silly or pointless hug therapy here! how stupid do have to be to say that this child doesnt like to be touched, lets hug him! they push him and it has helped but are not expecting miracles out of it everyone on his team is very aware that our priority is not for him to "normal" but for him to be happy so everyone knows that there are definate boundries to what treatment will look like. i worked in adult services for 5 years i know my rights as a parent and i know how to advocate for my son:) i also know what is important for him in the long run and if he never ties his own shoes or wipes his own behind so be it... as long as his spirit is strong and he keeps that smile and giggle that can lift the darkest moods from anyone around him, we are happy. they start to squish that and we start to squish back;)

Hi iam a dad with a son that was born 3 months premature,but he was not diagnosed with autism untill he was 4 and a half years old.But he could not walk till he was 3 years old he also has c.p and was not diagnosed untill 4 and a half years old. I put him in preschool when he was 4 years old but they throwed him out because he could not meet up to their standards. We home school him now he is 9 years old had trouble at school they stressed him out he got self abusssive. It took me and my wife 10 months to get him out of his self abussive behavior.