Anyone else not telling their child their autistic?

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eeyore710
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25 Oct 2009, 3:37 pm

I agree that your son is pretty young for a discussion. I can't imagine trying to tell my daughter when she was 4. But telling her when she was 6 gave her a lot of comfort in who she is and that it's ok to be different. I think when these kids get into school it becomes pretty obvious to them that there's something that makes them different from the other children, and the other children notice it too. We were careful to present it not as a "disability" but a "difference". We talked about how everyone's brain is different, and that her "asperger brain" is really good at things like figuring out math, doing puzzles, organizing, etc. but not as good at things like knowing how to play with other children and hearing loud noises. We told her that other kids have to work a lot harder at getting good at the things she finds really easy, and that she just has to work harder at some of the things her brain doesn't do so well. We also got her the book "All Cats Have Asperger's" and she was really pleased to see how she is similar to her cat (her comment after reading the book was "THAT explains why my cat is my best friend! We think the same!")

Before we told her, she was just miserable at school...depressed about not fitting in, traumatized because of bullying, etc. After telling her, she finds it really easy to tell me about things that happen on the playground without being upset. When things happen, she's able to say "I think it might be because they don't understand how my asperger brain thinks". I would say just keep a close eye out for comments from your son that tell you he is ready. For us, the day our daughter saw her grandpa for the first time in 3 years, and after he left, she said "Mommy I really love my grandpa. I think he is the only person I know that is like me. He understands computers really easy just like me but doesn't understand humans" we knew she was ready.



Tine
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25 Oct 2009, 10:51 pm

Thanks to everyone for posting on this. Most decisions that come along with raising a child on the spectrum are difficult but this is one that lingers and keeps me up at night. It feels like it really has no definite answer but I'm now leaning towards letting him cue me as to when he needs to make that connection. Now is not the time for us but when it is, I hope it can be a positive and helpful thing for him and us both. Again, thanks for sharing all of your stories with me and I wish you all the best.



Simone-Blanchard
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26 Oct 2009, 3:20 pm

Late to the post ... my son is 3.5 ... I don't think I'd tell him before 7/8.

Not sure he could make sense of it and (at least now) he does not indicate he feels different.



latreefarmer
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28 Oct 2009, 3:22 pm

Knowledge is power. If your child is high functioning, they should be told as soon as they are old enough to begin to understand. What's wrong with mentioning it at 5 or 6? If they don't understand or ask questions, just drop it and move on until they start asking about it.
I do think, however, a specific diagnosis might not be helpful as much as "on the spectrum" would be. a diagnosis will change over time, as the child matures. a "label" such as "pdd-NOS" may not necessarily fit 5 years after the diagnosis, but people seldom get re-diagnosed later. I believe that explaining neurodiversity to a child and where they fit is very important. It helps reduce confusion in an already very tough, confusing, world for them. An NT parent that is trying to protect a child from who they are can do more damage than they realize. When they do find out, they will feel that parent was ashamed of who they are and therefore refused to recognize and discuss it.



gbollard
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28 Oct 2009, 3:44 pm

latreefarmer wrote:
Knowledge is power. If your child is high functioning, they should be told as soon as they are old enough to begin to understand. What's wrong with mentioning it at 5 or 6? If they don't understand or ask questions, just drop it and move on until they start asking about it.


Kids are like sponges. Unless you're super careful around them, they'll pick up on your conversations anyway.

My kids know that it's not a subject for shame. It's pride if nothing else. It's their heritage - part of their identity and they're encouraged to celebrate it.



LadyMacbeth
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28 Oct 2009, 6:17 pm

I personally don't think any child that age should be diagnosed with anything cognitive related. He's not even in real school yet, so I'd watch what happens when he is.


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Psygirl6
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04 Nov 2009, 6:36 am

I have Asperger's, which was originally diagnosed as autism, but was changed to Asperger's in 1999. because they did not have asperger's in the USA until 1994, when my mom told me about my diagnosis, she said I had autism. I was mainstreamed fully in all honors college prep and was upset. There were high functioning autistic kids in my high school, but they were mentally ret*d and had difficulties with speech and other more "autistic" like cognitive issues. I had none. I was shocked at first, but I started to read books. I did eventually read a book called Autism and Asperger's, by Uta Frith. I completely Identified with the Aspergers' part, not the autism part. When I told mom, she said no, you have autism. For many years I obsessed on it and gave up on my life. though I went to mainstreamed school, with honors, I started associating myself with a disability that would not give me a future. I started to think I could not do things. Then in 1999, I got diagnosed with Asperger's because the therapist said I was not ret*d or learning disabled, and I only had the social problems and problems with non verbal cues and the typical Asperger's stuff. But because it was on the autsim spectrum, I got put into a residence, though I am 100% independent and a day program for autistic who are also mentally ret*d. this was all because when my mom told me about the diagnosis, she was un certain if i could be independent. If she would just have allowed me independence, no matter what and told me that it was no biggie and I can do anything everyone else can, this could be prevented. She just recently apologized for that mistake. If you do tell your child, also tell them that no matter what, they can still do whatever they want. Tell them also about the strengths. and if something happens, be supportive, listen to them. Love and support is the best medicine.
I hope this helps.



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05 Nov 2009, 10:56 pm

i am a believer in full disclosure but i am also a believer in parental choices and supporting that parent in their decisions. so i am not in a position to judge a parent because thier decison is different than mine!

we have a child who was suspected to have autism from about age 18mos. at 4.5 yrs he was dx with tourette's syndrome and by age 6.5 he was formally dx with aspergers.

from day 1 we have taught our children to accept all people for who they are not what they wish they were. our son and entire family fully know about his situation. i truely believe that this has formed an empathy, understanding and acceptance because we have been so open and honest about it. don't get me wrong though, it's not like we're always talking about it!

our son embraces his uniqueness and even though there are very tough times for him, there are so many awesome ones too just like with "typical" children (whatever typical means).

i do believe that him knowing the truth about why his life is different than other children's lives, has made him appreciate other children who are "different". he is so genuine because of it and we believe that one day he will become a great humanitarian and someone who will leave his extraordinary mark on this world because of it!

love your chidren for who they are and they will love themselves because they will understand!



latreefarmer
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06 Nov 2009, 8:44 am

This is such a profound thing to think about. One of the characteristics of being on the spectrum is difficulty with theory-of-mind, difficulty with seeing yourself in someone else's shoes, or just empathizing with others. The ability to realize how different people are, and why you yourself are different, can greatly improve a child's ability to relate to others.
I was 35 years old before I ever realized there were spectrum traits in my family, and how harshly I had judged peopled without seriously looking in the mirror. Empathy did NOT come naturally. I applaude you for taking this approach and teaching your child it is ok to be different, and the same goes for other people around him/her. Hiding it from them just makes things worse, complicates the thought processes going on in their mind, trying to understand the world around while lacking the same executive functioning skills others around them may have.


Swifty wrote:

from day 1 we have taught our children to accept all people for who they are not what they wish they were. our son and entire family fully know about his situation. i truely believe that this has formed an empathy, understanding and acceptance because we have been so open and honest about it. don't get me wrong though, it's not like we're always talking about it!

i do believe that him knowing the truth about why his life is different than other children's lives, has made him appreciate other children who are "different". he is so genuine because of it and we believe that one day he will become a great humanitarian and someone who will leave his extraordinary mark on this world because of it!

love your chidren for who they are and they will love themselves because they will understand!



Azharia
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06 Nov 2009, 9:19 am

I am an aspie who didn't find out till 21 so I can't advise there, other than to say that at 21 it was a relief to know. As a child it could have had other effects.

What I would suggest is not having a fixed policy. If you decide not to tell, be flexible to change this. At some point he WILL find out, and then he will wonder why you didn't tell him. If you tell him when it becomes important to him you will avoid that maybe? Unless it is at one of 'those' ages...



Swifty
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06 Nov 2009, 12:37 pm

Our son`s want and desire to befriend peers and participate in social situations with his peers surpasses his ability to do so. The behaviour does not match the intention sort to speak.

However, on a deeper more surreal level he can connect with the child who comes to school without a lunch or the child that is being NG tube fed in the resource room at his school. he seems more relaxed and natural. i think he seems more at home with other children facing adversities and therefore more relaxed and tics less too. when he is with children more like himself, he accpets their contirbutions to that relationship fully and without barriers.

With more typically developing children he seems to focus all of his efforts controlling the interactions he has with them, to fit his predetermined outcome for that relationship. he struggles to `fit in`with them regardless of his pure intentions.

We trulty believe his desire and his continued growth in the awareness of others feelings and opinions has developed because of our wonderful health care system, resources and available supports in our community. We also use ``brain gym`` prgramming both at home casually and at school and have found HUGE successes inthe last year. (for example he has now been 7 months ``meltdown free`` at school and in the community, that is amazing!)



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11 Nov 2009, 11:32 am

FaithHopeCheese wrote:
I have never been diagnosed but I have always felt different, and I am pretty sure I am on the spectrum. I feel you are right not to label him, but since you know,I'm sure you will be sensitive to it. I've spent most of my life feeling tortured because I have never fit in. You may want to present it to your son as a personality type, rather than a disorder. I'm sure you will get different opinions, though. The fact that you are asking this question shows that you are on the right track....


You are brilliant!! ! I like calling high-functioning autism a personality type because that is exactly what it is. Individuals who have more severe forms of autism will probably be in special services for longer periods of time which is better for their protection. I don't think that this particular group of people are concerned with what they are labeled as opposed to the concern of receiving what they need to live a nice life to their thinking. If a person is mainstreamed, then they are no longer considered part of the special needs population...thus the label is removed. That "label" identifies "who" needs services. Who needs more, who needs less...and who just needs social skills training. A person can have 100 years of social skills training but if they are around ignorant people, what good are they? You must extract yourself from the situation. How can you expect to fit in when you never knew what your individual shape was in the first place? Go place yourself where you fit. Wrong Planet.net is a start. Always remember, the majority may indeed rule but they are not always right.