why do some parents not tell there child they have autism?

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Pieplup
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07 Mar 2016, 10:22 am

Well, I've always known, fore my Brother was autistic, but not my sister. This helped me know, Also they don't want to hurt they're feelings, even though they have Alexithyia :lol:.


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ASPartOfMe
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07 Mar 2016, 10:24 am

Besides the openly Autistic who are excuse makers you see the opposite end of the problem here on WP many who have been told feel it is a lifelong curse which will doom them to never having sex, relationships, employment as well as endless bullying.

The issue for me is that is why should the parents have to figure out the least horrendous choice at all? Telling children or even diagnosing them should be a no doubt positive choice. It is anything but that in many locals.


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Last edited by ASPartOfMe on 07 Mar 2016, 2:07 pm, edited 1 time in total.

SocOfAutism
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07 Mar 2016, 11:03 am

ASPartOfMe wrote:
Besides the openly Autistic who are excuse makers you see the opposite end of the problem here on WP many who have been told feel it is a lifelong curse which will doom them to never having sex, relationships, employment as well as endless bullying.

The issue for me is that is why should the parents have to figure out the least horrendous choice at all? Telling childern or even diagnosing them should be a no doubt positive choice. It is anything but that in many locals.


Okay, yes- this is a good point. I don't know (<please note the emphasis there), but I think that the excuse makers may also be the ones being told it is a lifelong curse.

There are two ways *I* can see to find an answer to that. 1) a longitudinal study (I wouldn't do that because it would outlive me) or 2) a narrative study where boomer and veteran generation autistic adults tell us how they found out they were autistic, what autism-specific treatment programs they were in, how autism was described to them when they were younger, and then what kind of an impact they think it had on them. I would be willing and able to do that as early as next year. I would have to get a new IRB.



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07 Mar 2016, 11:14 am

SocOfAutism wrote:
This is a difficult issue. I am a sociologist who studies adults on the autism spectrum. I have a couple of friends who have worked with older kids/teenagers on the autism spectrum, so I have gotten some of their insights. Please forgive me for speaking plainly.

My friends who have worked in special education with openly autistic teenagers say that not all, but a good deal of them of them use autism as an excuse to get out of things that are hard or that they simply don't want to do. I have also heard autistic adults with late diagnoses admit that they would have done this if they had known they were autistic. So this is my answer to your question. I think parents don't tell their kid because they are trying to make them a more capable adult.

HOWEVER, it seems cruel not to tell someone something like that about themselves. Like letting a warrior go into battle with no shield.

I don't think that enough educators or non-autistic parents understand the importance of balance for autistic kids. For example, a special interest break for an hour after school is fine, but then ALL homework has to be done, with no getting out of the part that's really hard. The autistic kid should not be forced to eat something they say they can't eat. A somewhat healthy diet can be worked out. Maybe the kid will never eat an onion but if he will eat spinach with ranch on it, call that a win and leave him alone.

If you're an autistic kid and you're parents don't get this kind of thing, it may be up to you to make suggestions. Don't act up and expect your parents to magically understand. A little rational explanation and a few suggestions from you could drastically improve your life.



It seems common in kids to use it as an excuse but then again I have seen the same in adults. They find out they have it, bam they get worse as if they think "Hey I have autism, this means I don't have to do this anymore." Yeah I would be mad too if my partner did that. I also knew someone online who decided he had it and all of a sudden my feelings didn't matter to him anymore and my perspectives so he started to harass me and then he was stalking me. He was very hard to get rid of. I mean c'mon. I don't know exactly what these other adults are doing but when I tried to use it as an excuse, it was to get out of punishments and responsibilities and dealing with stressful situations and just letting myself have meltdowns instead of trying to hold them in and I expected everything to go my way because I thought that was the way it should be for me just because I have AS.


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07 Mar 2016, 11:41 am

I mean people who aren't disabled (yes I consider ASD as disabling, don't argue with me about semantics please) make excuses too for all sorts of things, often more so because they don't know what it's like to have to work 10 times harder to achieve the things non-disabled people achieve. You also have to make the distinction between valid excuses and invalid excuses. An excuse is nothing more than a reason for aberrant behaviour. You don't tell someone in a weelchair that he's not trying hard enough to walk. Being diplegic is a valid excuse to never walk, which would be considered abnormal behaviour otherwise. Just because ASD is a neurological disorder doesn't mean we should treat it differently. We should all try to do what we can but we should also respect one anothers limitations.



neverknew
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07 Mar 2016, 12:03 pm

We adopted my daughter at birth and my husband would not let me tell her. We finally did when she was 13 1/2. It was only because her psychologist said we had to and to be convinced, he had to discuss it with her psychologist.

She is 14 now.

When her psychologist told me my daughter was autistic, which I had suspected for years, I told her even before she had an "official" diagnosis. She had been bullied relentlessly at school. I explained, as best I could, how her brain was wired a little differently. I explained that some thing would be easier for her than for her peers and some things more difficult. I explained that the social world was one of the things that would be more difficult and that was why she had those problems.

We talk, she knows that she is not any better or worse than anyone else. She knows that there are a lot of other kids her age that have the same problems she has and may be on the spectrum but not know it. I bought her books about navigating the adolescent school/social years.

Her self-esteem is much higher now that she understands why no one at school liked her. And that she is different but it is ok that she is different.

Going through life thinking there is something "wrong" with you has got to be harder than knowing you just process things a different way and have learn some things that come easy to others.

Plus-no more secrets!


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07 Mar 2016, 12:08 pm

All I can say is that I wish I would have known a lot earlier. The choices I would not have made. The repetition of pursuing wrong paths because I thought the issues were something else.

I would have liked to have had knowledge and be able to adapt to the limitations I have other than "Professional f**k up".

I know in my family that we have learning disabilities all through them.
My brother diagnosed in the early 80's with test anxiety. http://www.adaa.org/living-with-anxiety ... st-anxiety.
Now a Mechanical Engineer licensed in several states, internationally published in trade pubs. Runs two departments at a new job which came with massive promotion

Son, Dyslexia
Works in electronics and telecommunications

Grandson: Diagnosed Asperger's
Still doing good, working towards his eagle scout.

Still waiting to find out about me fully.

I hate to say it, but all of them were diagnosed and learned to work within their limitations and it helped them thrive. Of course, quite the opposite of helicopter parenting or trophyism at work there. Definitley the 'tough love' school of thought balanced by education towards their disabilities.

We all have the same traits. They all had help. They are all successes. I, who had no idea, am the 'professional f**kup'.

So, that's from my perspective and I know it's unique. What may work in one case will not always work in other cases.


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neverknew
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07 Mar 2016, 1:28 pm

I just want to add one more thing.

In junior high school kids become very mean. If your kid doesn't know he's autistic, he may just think he's a freak.

Before we knew my daughter was suicidal from the bullying and not fitting in.

I would rather have her alive and making the occasional excuse to get out of doing a hard assignment than dead.


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07 Mar 2016, 1:55 pm

SocOfAutism wrote:
ASPartOfMe wrote:
Besides the openly Autistic who are excuse makers you see the opposite end of the problem here on WP many who have been told feel it is a lifelong curse which will doom them to never having sex, relationships, employment as well as endless bullying.

The issue for me is that is why should the parents have to figure out the least horrendous choice at all? Telling childern or even diagnosing them should be a no doubt positive choice. It is anything but that in many locals.


Okay, yes- this is a good point. I don't know (<please note the emphasis there), but I think that the excuse makers may also be the ones being told it is a lifelong curse.

There are two ways *I* can see to find an answer to that. 1) a longitudinal study (I wouldn't do that because it would outlive me) or 2) a narrative study where boomer and veteran generation autistic adults tell us how they found out they were autistic, what autism-specific treatment programs they were in, how autism was described to them when they were younger, and then what kind of an impact they think it had on them. I would be willing and able to do that as early as next year. I would have to get a new IRB.



Where are you going to get your lab rats? It will be important to know how many of the untold and untreated take their own lives, no?

Pardon me. I've always been told I am too blunt. I'm often told I miss the point. Maybe I missed the point here? Or maybe I am not seeing the big picture?


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07 Mar 2016, 2:19 pm

SocOfAutism wrote:
ASPartOfMe wrote:
Besides the openly Autistic who are excuse makers you see the opposite end of the problem here on WP many who have been told feel it is a lifelong curse which will doom them to never having sex, relationships, employment as well as endless bullying.

The issue for me is that is why should the parents have to figure out the least horrendous choice at all? Telling childern or even diagnosing them should be a no doubt positive choice. It is anything but that in many locals.


Okay, yes- this is a good point. I don't know (<please note the emphasis there), but I think that the excuse makers may also be the ones being told it is a lifelong curse.

There are two ways *I* can see to find an answer to that. 1) a longitudinal study (I wouldn't do that because it would outlive me) or 2) a narrative study where boomer and veteran generation autistic adults tell us how they found out they were autistic, what autism-specific treatment programs they were in, how autism was described to them when they were younger, and then what kind of an impact they think it had on them. I would be willing and able to do that as early as next year. I would have to get a new IRB.


Autism was described to me when I was in my early 30's when I saw Rain Man on my VCR(Video Cassette Recorder). It had zero impact because I did not think it applied to me. Treatment has been support groups(which I can't go to because of my health woes) and WP. Not that I would want that I would want it, but ABA often is the only therapy many insurance companies pay for is not given for people once they become adults.


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07 Mar 2016, 3:14 pm

neverknew wrote:
SocOfAutism wrote:
ASPartOfMe wrote:
Besides the openly Autistic who are excuse makers you see the opposite end of the problem here on WP many who have been told feel it is a lifelong curse which will doom them to never having sex, relationships, employment as well as endless bullying.

The issue for me is that is why should the parents have to figure out the least horrendous choice at all? Telling childern or even diagnosing them should be a no doubt positive choice. It is anything but that in many locals.


Okay, yes- this is a good point. I don't know (<please note the emphasis there), but I think that the excuse makers may also be the ones being told it is a lifelong curse.

There are two ways *I* can see to find an answer to that. 1) a longitudinal study (I wouldn't do that because it would outlive me) or 2) a narrative study where boomer and veteran generation autistic adults tell us how they found out they were autistic, what autism-specific treatment programs they were in, how autism was described to them when they were younger, and then what kind of an impact they think it had on them. I would be willing and able to do that as early as next year. I would have to get a new IRB.



Where are you going to get your lab rats? It will be important to know how many of the untold and untreated take their own lives, no?

Pardon me. I've always been told I am too blunt. I'm often told I miss the point. Maybe I missed the point here? Or maybe I am not seeing the big picture?




I agree with you that suicide in autistic people is a very important thing to know more about. I am unable to professionally or personally discuss suicide because my closest family member, my older brother, killed himself some years back. I would consider working on a collaborate project involving autism and suicide if someone else researched and wrote the suicide portion.

To answer your first question, I would probably recruit using something called "snowball sampling" where you find some participants and then get them to refer you to others. I'd look for the experiences of both people who had regular careers and lives and people who were in and out of special education and even institutions, still I'd want to also talk to older autistics who may have been hospitalized back when that was trendy. I don't know how many people I'd be able to find so I would probably focus on representative experiences and try to get those people to tell me as much as they could.

I don't have anything official set up for this, I'm just thinking aloud. I plan to do projects based on what autistic people tell me they want to have out there. The next one I'm officially planning is Autistic Adults in Positions of Power.