When to tell a child 'You have Asperger's...'

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HI folks -

I'm conducting an anonymous, very short opinion survey to gather information on when to disclose ASDs to children. Many educators and therapists believe that children should NOT be told until they are in their mid to late teens. However, every Aspie I've worked with wished they had known much earlier. But no one asks the kids, and up until now, no one has asked the ASD community.

Please help me make your voices heard by taking this survey. If you have questions, you're welcome to post them here, or to write me at janjt at evolibri.com. Thank you so much!

http://www.surveymonkey.com/s.aspx?sm=3 ... gwqw_3d_3d

Jan

whe all heard it at teens and you know what?ive been wondering and questioning all my life long whats wrong with me so i guess you should tell him but maybe hear others out to

Well, the sad thing was for many folks is that there were no 'words' to describe what ASDs are...hence, many folks over the age of 19 did not get diagnoses in school...

I told my son when he was seven and the school district FREAKED OUT. I tried to set up an inclusion program in his class and they told me it was child abuse to point him out this way -- that if I just shut up and didn't say anything, no one would notice his differences.

I AM SO SURE! Like the other second graders weren't going to notice him cowering under his desk rocking back and forth...

i would let the child know, in age appropriate terms, that not everyone is wired intellectually the same way. and that some kinds of wiring are better in some ways, and worse in others... the whole diversity rap.

the child will know something's wrong if life is a misery, and they know very young. best to let them know that not everyone experiences the world in the same way, and let them know early, so they can have their "aha! those people don't think like i do and so...." moments as appropriate.

i'd be very sure to flavor this all as "different" not diseased or disabled or in any other negative way. i also wouldn't want to go too far in the other direction - yes, there are notable researchers, etc., who are/were most likely on the spectrum, but there are far more ordinary people than the wunderkind. just keep reminding that people are like rainbows - more than one color, but still part of the rainbow. and help them understand why the others don't see the world as they do.....

there wasn't a term for it when i was in school, and i was miserable and seriously (clinically) depressed from the time i was in first grade. had hell when i first entered the workforce until i learned to play the game (and that took me over 10 years of coordinated failures). if i'd known all along what i know now, i really do think life would have been much different. i'd have faced the same challenges, but i'd have had a clue what was going on and which way to go, and why people were so generically bizarre and incomprehensible. you don't do a kid any favor by pretending nothing's wrong.

Last edited by Nan on 06 Sep 2008, 11:22 am, edited 1 time in total.

whell then i dont know what to say seems like being an aspie always end up bad

It doesn't make much logical sense. ASD doesn't just kick in the teen years. If you know it about earlier on it may help, whereas as not telling them obviously cannot help. I was aware of something as long as I remember, but was diagnosed as an adult. Diagnosis and services for adults is very poor and you really need to fight tooth and for it.

Ethically I believe it is wrong for 'professionals' to withhold information about a person’s health. This is because such practitioners are deluded into thinking they know what is best for that person, based on what they happen to believe. So rather than enabling they are actually preventing any other knowledge to come to the fore. I think this is a very dangerous thing indeed. There was a thread on this quite recently. However well intentioned it is, it is never a good thing. My godmother has MS. they didn't tell her for a god part of a decade because they believed it was better that way. When they eventually told her she developed temporary blindness in a very short space of time. There is no evidence that telling her earlier would have been more detrimental.

Last edited by 0_equals_true on 06 Sep 2008, 11:32 am, edited 1 time in total.

I totally agree, Nan. I'm having a hard time using the term ASD any more because of the word 'disorder'. In practice, I use the term autistic spectrum difference or autistic condition...we have to get away from the word DISORDERED. Yuck! I'd love it if you could take my survey -- I'll post the results here (as well as on my website) if folks are interested...it runs for three months. Trying to get as large and broad of a survey sample as I can, and will submit the results to scholarly journals as well for publication...onward!! !!

then count me in on taking your survey, Janjt, I don't have any children, but I do have an opinion on when I would have liked to have been told!

Merle

You have no idea how frequently this happens. I confer with psychiatrists and psychologists all the time, and they FREQUENTLY believe that our mutual client has an additional or different diagnosis and yet do NOT relay this to the client. I agree it is unethical, and yet, it happens all the time. On two occasions, **I** have told the client what the other professional thinks is his/her diagnosis, because I believe the client deserves to know (and in both cases, I also believed that the other professional was WAY off base).

Remember, too, that CHILDREN have few legal rights. If parents, guided by misguided professionals, don't disclose, the child will not know. This is WRONG! I see the depression and anxiety disorders that come from kids believing for years that they are DEFECTIVE because they did not know what was really going on.

It would have been soo much easier for me if only I had known... My mother knew when I was 11, but she didn't want me labeled. The indirect result was that I ended up so stressed by trying to cope with living on my own that I had to be hospitalized twice. No surprise that my recovery started when I found out I had Asperger's and started learning about myself. I'm independent, though still disabled, today, and I've taken up my college education again. If I'd known earlier, I might easily have my master's degree by now.

Tell the child early. The earlier, the better, as soon as he can understand even partially. Keeping that kind of a secret from a child is the worst sort of betrayal.

Last edited by Callista on 06 Sep 2008, 11:52 am, edited 1 time in total.

Thank you for doing this survey.

YES!! ! Tell him yesterday!

The whole point of not telling him is that they fully intend to break his mind.
Or better yet, prevent him from developing a Theory of Mind in the first place.
From their point of view, allowing someone who so different to be successful would be immoral.
He must be crushed, from an early an age as possible.
Surviving a year with an abusive teacher would be difficult enough with emotional defenses.
They want him to do it with no defenses at all.

Children definitely do notice the difference. Kayli is painfully aware of being different. Plunking a neurodiverse child into a classroom without education for the other children is not inclusion, it's torture. It's easy to fear and ridicule what you don't know. The culture of shame and exclusion for people with differences has lasted far too long.

Inclusion of people with differences is the new paradigm and about time. It will take some time to bring it to reality. All children need to learn that people are different and why, and that it is ok to be different. This needs to be part of the school culture from the beginning. Some differences are obvious, such as blindness or mobility disabilities. Others may be more or less invisible.

If my child can learn social skills, so can an NT child!!

This is a wider issue of sanctioned ignorance. From my own personal experience regular doctors/GPs on average know little of neurodevelopmental disorders and also mental health matters. Not just that, some feel they have the right to impose what is just their very uneducated opinion. When was already diagnosed once (I've been diagnosed a couple of times), some doctor who I was no longer seeing, decided to reply to a letter that was months old and I though has been lost (and spent a great deal of time chasing it). The letter implied that there was no point perusing any diagnosis, and also implied that my current doctor would agree with him, which couldn’t be further from the truth. He had no knowledge about my Asperger's I hadn't told him, nor did I know about it when I was his patient, but he was referring to what was then an manly unknown problems, and executive dysfunction. ED was probably one of the most significant factor in my diagnosis, but many doctors poo poo'd it for years, simply because they have very little functional understanding and a modicum of old school behavioural quackery, that was watered down to be onside with physicians in the first place.

Teachers and therapists should be more sceptical of their own abilities. Not that I believe that they can't benefit, but without this they are worthy of a syndrome themselves. It was actually a shrink that first mentioned Asperger's to me. She was not over confident in her abilities that she thought she could diagnose me. If a clinical psychologist can’t make that decision then there shouldn’t be therapists and educators with a certificate making such fundamental decisions. Who do they think they are? Going back to the original question, no one has the right to withhold that information, no matter who they are.

I would tell the child as early as possible, avoid sugar coating things. I would relate to him, ask how he has found fitting in at school and how hard it is and to understand people, thinking themselves as different. Once you've got this relation of understanding you should have their attention. I'd recommend to the child it's best if they don't tell anyone else as they may not understand or freak out and label them or make them feel alienated at it.
Tell them straight as an adult. I've had to re-learn things because of the schools way of sugar coating education.
"When a mummy loves a daddy...." <sex ed. How can they be parents if they have not conceived yet?
"Birds and the bees" - which is which? No, seriously

That's just wrong, Callista. And I'm sure your mom didn't tell you because other 'authorities' told her not to. If you haven't already, please take my survey -- I need this data from YOU so that I can tell the professional world to stop this nonsense. We, the NTs, cause so much harm by 'protecting' children -- WE are the ones who create shame around this issue by acting as if it is shameful to be different. I was hauled into a school conference room and chastised as if I were a child myself by the special ed director for telling my son he had AS when he was seven. I was 41 at the time, certainly old enough to make my own decisions, but treated like a pariah for telling my child about his differences...

Here's the link again...

http://www.surveymonkey.com/s.aspx?sm=3 ... gwqw_3d_3d

I would have liked to know a lot earlier than mid to late teens. If I had known about Aspergers in childhood/early teens and onwards I would have reacted to my unpopularity in a much less destructive way.

I think children should be told as early as possible. As soon as you have a definite diagnosis, tell them.