Thursday, February 2, 2012

Question of the Day: To Tell or Not to Tell

This is a new segment for my blog; I don't think this will be a weekly thing, but as I hear more and more questions I'd like to get your opinion on what you think.

So, today's question, which I've heard at my last four presentations, "When is the right time to tell my child that they have Asperger Syndrome?" I've heard many different parents give many different answers. Some parents recoil and decide to never tell the child, others wait for the right time, and others talk about it as soon as possible.

Often times I hear, "Well, when is soon too soon?" When I get asked this I recount this story about the time I talked to a 5th grade class. That class, after hearing me, had an understanding of what it is and just this week I got word that the person with Asperger's in that class is doing much better.

So, from that story, 5th graders can understand what it is, but would people in younger grades? I heard a story from a co-worker here at TouchPoint about a 3rd grader who is constantly asking his parents, "Why didn't you tell me sooner?" So from that child's standpoint it is never too soon.

When I am confronted with this question I often say, "If you've met one person with autism, you've only met one person with autism and each person will react differently." I'm leaning towards answering more on the "earlier is better" front because I think back to all the social disasters I had in school and, for me, the blow-ups could not be explained. The only conclusion I could draw was that I must really be bad or people must really not like me. With that being so, how could I work on the right things to say when I didn't know anything was different and that everyone else in the world didn't have the exact thoughts I did.

This post isn't about my thoughts though, what is yours? If you are a parent did you discuss it as soon as possible, when the time was right, or are you still waiting for that right time? If you are on the spectrum when would you have liked to hear it?


  1. Perhaps when they start noticing that they are different?

  2. I have fought my way through school, both primary and secondary, because I didn't know what was wrong. I kept being bullied and I kept exploding. Everyone said I didn't need to be checked out, because I had great grades.
    Even when I said that I thought I needed the same help as another child with Autism, they still didn't think I had Autism and also didn't give me that help.
    This all ended up in me getting Chronicly Fatigued. I've gone beyond a burn-out. Because of all this I need help from the government. I'm getting government profit and a jobcoach and I don't think I'll be able to live alone without help in the house, because I don't have the energy to work AND do the household.

    My story is a very extreme story of what can happen when everyone ignores your cries for help.

    A lot of people with Autism (a lot, not everyone) have trouble voicing their problems. So even when you're not ignoring their cries for help, you might just not have noticed.

    My opinion is to tell them, but don't bring it as a bad thing. Make sure they know they didn't change. That the talents they had before, they still have. They didn't suddenly get a disease. But that you're simply telling them what is going on and if they need help, they can get it and if they don't, they can choose to ignore it.

    In my opinion this is the best way. So as soon as possible, but with the words I stated above. Then they can be at peace with it and decide themselves whether or not to do something with it.

  3. I was subbing last week for a third grade class in which I have gotten to know the sweetest little aspy boy. I asked the class when we had some down time if they had any questions for me, and of course all the hands went up. One child asked me if I had any kids. I started to answer when the little aspy boy's hand went up. I nodded at him and he said, "and she has a boy with aspbergers like autism just like me, and he has written a book." I said yes I do and he is as sweet as you are too. He was so proud, and so am I, that I could say that to him. This little boy is totally aware that he is not like every one else and yet he is a special person. He was so proud to be like "My boy". Being your mother does make me proud and I can see that what you have written has helped me with other children.Thank you. Some students said to one another----"what is aspbergers?". This caught me off guard and I am not sure what to tell the other children. I would like to know if you have any other insight as to what to tell the other children. This little boy is a well adjusted sweet child that is lucky to have the parents and school that he has.

    1. That third grade boy is my son. Thank you! I am glad he was able to share that moment with you. He told me that you talked about "your boy." I am also proud of my son because he teaches me daily things I never thought about and he helps me to be patient with others. Thank you Aaron for all the writing you do on your blog! It is a great help to me,too! What do you tell his classmates? He is very accepting of his aspergers but it is hard to define to his 3rd grade friends.

  4. My son was diagnosed with being on the Autistic spectrum disorder at 3, and at 4 we were told definitely Aspberger's Syndrome. At 7 i told him he had Aspberger's and he was SO relived! i told him as much about the syndrome as possible, and told him he was lucky to be an 'Aspie'. at 17 he now says he is proud to be an Aspie, he explains it to any one who shows interest/curiosity.
    Most children hate to be lied to, and don't trust you if you keep secrets from them, tell them, give them a chance to embrace their 'quirks' their 'differences' and their 'uniqueness' let them be proud to be who they are.

  5. Diagnosis and integration are two different things. Although Aaron wasn't diagnosed until he was 20, he realized he was different but didn't know why. He also thought that loud noises felt the same to all the kids in his class and he was afraid to complain about it because he didn't want to appear weak. If Aaron had been diagnosed at a younger age he would have been told about Asperger's and its symptoms in order that he didn't think he was crazy. I was raised by alcoholic father and was quite damaged by his abuse. It wasn't until I read Adult Children of Alcoholics that I realized I wasn't crazy. I was quite normal for what I had been through. I think it's the same with children with Asperger's. Talk with them. Tell them. When things are talked about fear is dispelled.

  6. We finally realized what was going on with our now 14 year old when he was 8. We were at a private school at the time and realized they just didn't have the resources so we switched to the public school and they have been fabulous in working with us. He has an IEP, with aides and some smaller classes. At first we just talked about how his brain processes things a little differently but didn't really call it "aspergers". When he was 10, we had some books and told him it was called "aspergers"...we tried to stress the positive and not make it seem like a bad thing, but he did not take it well at all. He was very upset and mad that we were trying to say he wasn't "perfect". I'm not sure that there was any good way to handle least it was said. Now, we don't really "say" Aspergers...we sometimes have books laying around, and we talk about how we sometimes have to take different approaches to things and he seems more willing to particpate in conversations and open to suggestions...we just don't label it. Maybe that's not the best approach, but for us it seems right. We're having lots of bullying issues these days and as we work through them all, he seems more receptive and seems to be opening up a little more. I think in our case, perfectionism is a big deal...he always wants everything to be perfect and authentic and that's why he was so upset when we told him.

  7. I am on the other end of the spectrum. At 17, after a rather wild few months, my doctors & psychologists diagnosed me with "autistic tendencies." I managed to hold a social life, dated a few girls, held down a steady job, got promoted, saved up money, bought a car... etc... It came as a shock to me, and somewhat offended me when my parents sat me down and told me.

    I was told a lot of different views I had and things I do aren't normal, and the autistic tendencies "explain" it. The problem with being diagnosed is that Autism and Aspergers come with a negative connotation, because people are only shown the extreme end of the spectrum from news segments and articles. It was frustrating to look up the definition for the first time, watch Youtube videos, and think "gee, how are they putting me in the same category as those people?" According to my doctors, being able to play guitar well, watching movies that aren't CAR CHASE WITH LOTS OF BAD GUYS KILLED 7, and being well spoken is a sign of Autism.

    I feel someone shouldn't be diagnosed with Autism or Aspergers unless their case is moderate to severe. If you told my girlfriend I have aspergers, or close friends, they'd immediately think "oh, I saw a thing about that on the news one time, he must be really weird."

    My younger cousin was diagnosed at a very young age and with him, it's apparent. Lack of eye contact, still very interested in childrens cartoons, no social life, rarely talks to anyone other than his mom and dad...

    Everyone is different. There are truly some people out there with Autism or Aspergers, and that's okay. The problem I have is that for the people who are on the light end of the spectrum, they're grouped into a disorder that has a negative connotation when the disorder may not interfere with their lives at all.

    But that's just my opinion, man.

  8. We and my son did not get the diagnosis of Asperger Syndrome until he was 21. We knew there were sensory issues when he was a few months old. He did not like to be held and, due to an inner ear disorder, could not hear properly. When he started to talk, his speech sounded garbled to us but he was pronouncing words the way he heard them. Throughout his school years he was labeled LD, ADD, PDD-NOS, and never got the proper intervention. Identified as "Special Ed", he was bullied by students and teachers alike and barely made it out alive.
    He has been receiving OT and psychological therapy for 10 years. To this day, he refuses to read about Aspergers and, try as I may, I cannot convince him to read your blog, Aaron. So in answer to your question, I guess I don't know as my son doesn't do anything with the information and, his history being what it is, I don't believe finding out earlier would have made a difference as the schools around here and nothing in place at the time to deal with anyone on the autism Spectrum.
    BTW, are you aware of the proposed changes to the diagnosis of Autism in the DSM-V? It will cause many children and adults diagnosed Asperger or PDD-NOS to lose their diagnosis and the services they so truly need.

  9. Yeah, I've heard what might be in the DSM-V and am concerned. Hopefully the outcry will help the authors do the right thing.

  10. I believe that they should know the very same moment that their parents find out. It is information, so long as it is properly explained to them, that could very well be vital. It's no different than any other diagnosis one might get, for an illness, cancer, or whatever. I would go as far as to say it is cruel to withhold the information from them.

    How mad would you be at your parents, if they were told at age 3,4,5 or so, that you had Aspergers Syndrome, but they didn't tell you until you were a teenager? I would totally flip.

    Now, if they find out when you are a baby(is that even possible? I don't really know much about being diagnosed) then I would say as soon as you are old enough to talk and understand whats going on. There is no reason for that information to be withheld from you. The more you understand about yourself, the better you will fair in life.

  11. My son was 7 when he got diagnosed with classic autism with medium to high intelligence. It was within a month or so from my own diagnose (aspergers). Even during the time the diagnosis was done (took about half a year) he was fairly aware of what it was for and when we were informed, he was there as well.
    It worked out fine. He knows what he has, he knows what I have. He also knows that it is a part of him and not everything he is. Some things he does is him being a 10yo, others the autism, almost always a mix. He has that 'whatever' attitude that comes with his age, yet the way he does it has autism in the fine print.
    I really can't see what a better way would have been in our circumstances.

  12. I see the question a lot and this depends. As soon as the child sees that he/she is different from his/her peers, this is the time. However, in order to handle it skillfully, I recommend seeking professionals. Professionals are supposed to be better at breaking the news of a diagnosis easier to take to kids. Then, they can give the parents some advices moving forward so that the message is consistent.

  13. I happened to be reading the checklist online and my then 7 or 8 year old was next to me, and she said, "HEY! We have that don't we!" I said it looks like it! Then I called her sister in (she was about 17 or 18), and she said, "Oh wow...that's us!" And I KNOW it's me as well. Still no diagnosis any time soon...not that we actually need it now. Would have been handy in primary school though! So should know what's going on.