When should I tell my son about his diagnosis of Aspergers?

73 comments »

1. For us this is a non-issue. Our 8 year old son wouldn’t have a clue what we were talking about if we even attempted to sit him down and tell his that he has a diagnosis of Aspergers. He is just an odd kid with quirky ways about him and is happy just being himself, regardless of how others may view him. I don’t think he sees himself as different even though everyone else in the world does. He has been evaluated as “gifted” but I honestly don’t think this information would even phase him in the least. It would go in one ear and right back out the other.

   Comment by Lisa Johnson — February 24, 2009 @ 9:40 am

2. I can’t comment to the fact that the child is only 7, but I can tell you that when my grandson was diagnosed at age 13 and found out there was a reason for him being ‘different’ it made a world of difference in his self esteem and overall acceptance of himself. I agree that the child should be told, on an age appropriate level of course.

   Comment by Sandy — February 24, 2009 @ 9:45 am

3. Q: Can explaining their diagnosis be detrimental in the way of giving them an excuse for not following rules, acting out or not doing their schoolwork? What would you recommend?

   Comment by Cindy — February 24, 2009 @ 9:49 am

4. I told my 9yr son about his Aspergers when he told me that he KNEW there was something different in his head. He thought he was sick or something. Explaining to him about his Asperger’s in a positive way, was the best thing for him; it seemed to explain alot and he accepted it very very well. I am very glad we told him.

   Comment by Anne — February 24, 2009 @ 9:58 am

5. When our son was 8 we told him he was “A.S.” and that described some of his differences from other people. For example, he is “Awfully Slow” at getting dressed, eating meals, getting organized; “Always Sensitive” to sounds, noise and tastes and touches; he is “Angry Sometimes” especially when he has meltdowns. He knew all these things already and was amused that a doctor would help him with all his A.S.’s. Within about 6 months he asked us on his own “What does A.S. really stand for?” and we told him Asperger’s Syndrome and all about Dr. Asperger and all about how no one in North America knew about Dr. Aspeger until the 1990’s. He found all of this totally fascinating. Is he happy he has Asperger’s? Of course not. Does he still often wish he was like other kids? Of course he does. But at least he understands now why he sometimes behaves quite differently from other kids and that lots of adults, his parents, his teachers, his teaching assistants, his psychologist and doctor are all trying to help him and all love him just the way hs is – awfully slow, always sensitive, angry sometimes and Amazingly Smart!!
   Steven & Heather
   p.s. Our son is now 9 and in Grade 4.

   Comment by Steven & Heather — February 24, 2009 @ 10:05 am

6. My son was diagnosed almost 2 years ago and he will turn 8 next week. We told him recently to help him cope with things at school. Classmates already see there is something ‘different’ about J. We armed him with a bunch of fantastic books about Autism & Aspergers that he could share with his classmates. We had to tell him it’s not a cruch. If anything it’s an excuse for why he’s so good at reading and math but why he has to try harder to succeed at other things. It helped his peers to understand J, but he is still a bit in oblivion. He is not in oblivion when it comes to getting out of trouble with teachers–he’s got that manipulation down pretty good.

   Comment by Marjery — February 24, 2009 @ 10:07 am

7. My son was diagnosed at age 10 , we told him at that point, he has over time shared the information with selected friends which has helped him out greatly. One thing I would say is that we refer to it as his “specialism” , rather than problem or disabilty – as that what it is. He has many wonderful qualities related to his condition that his older brother and sister don’t have.

   Comment by Kathryn Bryce — February 24, 2009 @ 10:10 am

8. I agree with Sandy, my son was diagnosed at age 12. He was upset when I first told him but since has come to accept the diagnosis. He is now much more positive in outlook than prior to being diagnosed and informed. He sees his “difference” as sort of a badge of honor now.

   Comment by Cindy — February 24, 2009 @ 10:14 am

9. There is a book called Th Gift of Aspergers by John Ortiz who is a therapist in the UK who treats Aspie kids. I recommend you adjust your own attitude about the disorder by reading this book before you present the concept to your son. I told my son at age 9 and before that I always talked about every one having a different brain and his having some differences. There are postive things about Aspergers despite the challenges. The other thing is that Aspies tend to obsess on things so if you tell them about a particular deficit they may fixate on it. So that needs to be kept in mind as well. Good luck!!

   Comment by Sandy Kabel — February 24, 2009 @ 10:15 am

10. I am so allergic to labels. Whatever you tell your son, it is what you think and feel what he will get from you. If you feel this is a problem ( his diagnosis) then he will think he is a problem. If you just love and accept your son just as he is, then he will get that and no matter what you will let him know, now or later, he will rest assured that he is OK. There is nothing wrong with being an Aspi, in any case there are lots of positives.

    Comment by qkey — February 24, 2009 @ 10:15 am

11. My son was diagnosed at age 5. At about 6 to 7 years old, he started asking questions. He had noticed he was different & started asking us why. My husband & I struggled only for a little bit on whether to tell him or wait til he was older. We decided to tell him – if he was old enough to ask, he was certainly old enough to know, in our opinion. We told him what he had and explained that it was nothing to be ashamed of. After all, how boring a world would it be if everyone were the same? We explained that everyone is different, everyone has something that makes them special. The only thing it means is that his brain thinks differently than other people’s. It does not mean that he can’t do something, it just means that he will sometimes have to work harder to do them. We never have accepted Asperger’s as an excuse (although he has tried to use it-which was another of our concerns before we told him). In our home, it is not an excuse – it only means that he should try harder. We have always told him that whoever he is, he is a gift to us and he is a wonderful person. Now at age 10, he does struggle with difficulties & sometimes tells us that someone would “fix” his brain. We just tell him that there is nothing to fix, because he is not broken. All you can do is constantly encourage and ensure him that he is loved no matter what. A diagnosis of Asperger’s does not change that.

    Comment by Lela — February 24, 2009 @ 10:25 am

12. This article is so timely for us. Our son is 9 years old and we have been trying to make a decision as to whether we should tell him or not. He is very aware that he has some differences from he peers, but he really doen’t seem to mind. When we told him we were getting him help withthe troubles he was having at school, it was almost like a relief fell over him and he bacame a much happier young man. I am concerned that this could change if we tell him. Has anyone had any really negative effects from telling your child?

    Comment by Sondra — February 24, 2009 @ 10:28 am

13. I am the grandparent of a 7 year old whose parents have not been given the diagnosis title of Asperger’s for their son! I work in the school district my grandson attends so know from the professionals there that his diagnosis is Asperger’s. Shouldn’t the doctor reveal this? It is the “elephant on the table”.

    Comment by Alice — February 24, 2009 @ 11:00 am

14. My daughter is 8 and has noticed for at least the last year that she was different. This difference has worried her to the point of now being referred for depression counselling. We’ve told her about her aspergers but we’ve also shown her other extremely successful people out there with Aspergers. We are trying to teach her to be proud of it! As to when/if to tell I really do think its to do with whether they are noticing that they are different and how they feel about it.

    Comment by Pip Keefe — February 24, 2009 @ 11:16 am

15. I am ready to tell my 9 year old son about his aspergers. I have been just putting it off. I love all the comments. Does anyone have more suggestions on what worked for them. Thanks!

    Comment by Betty — February 24, 2009 @ 11:16 am

16. Hi, Our daughter was diagnosed at 5yr old – she is now 9. We did not sit her down and say ‘You have Aspergers’ it was something that came out over time. She was well aware she didn’t fit in to the social circles and found relating to others very difficult – when we told her that her social problems were because of this little extra something she had been given when she was little and that this little something was called Asperger – kind of like a pal in the corner but it helped make her extra special to us. Since telling her like this she has come on tremendously. At the end of the day you know your child and you will be able to gague when he is ready.

    Comment by Kirsten — February 24, 2009 @ 11:19 am

17. with holding information is lieing and dealing with aspergers is quite enought with out a child hating his parents for lieing to them and no one perceives right and wrong quite like me and other adult aspies do its from a young age if you raised us not to lie you should not lie to us me and my mother are still not on speaking terms because she lied to me about not tell me about something and shame on you for with holding that information once hes old enough to speak the sooner the child know the sooner he can learn coping m,mechanisms we adults never got a chance to built. now most of us can’t hold down jobs because we can’t deal with other adults

    Comment by allandnn — February 24, 2009 @ 11:36 am

18. Hi all. Our experience was that when our 10 yr old was younger and noticed differences in other people we explained the same “our differences make us special” and encouraged him to accept everyone as they are. As HE became the different child the same philosiphy was not applied to him. He was ridiculed and rejected by his peers. He bought all the non-bullying rules yet when he applied them,(calling his “friends” on being bullies) The situation became unbearable. He was not diagnosed until he was 9. We moved schools and things are a bit better. We explained his diagnosis and at first he tried to use it as an excuse. Just like Lela it is a non issue at home for him or my 5 yr old, diagnosed last month. Now we are trying to help him understand why nobody followed the rules when it came to him. We have a lot of healing to do, but telling him has made a difference. I told him that it is like when we go see grandma. Most of the time we take hiway 5, but some people can get there from hiway 101.

    Comment by Katie — February 24, 2009 @ 11:48 am

19. My son knows his diagnosis but I don’t think he understands what it means. I try to work with him every day.

    Comment by Michelle Barger — February 24, 2009 @ 11:48 am

20. I had the same question. We have not told our son of his diagnosis yet, either. He is 9 and has only been diagnosed for about a year. He is also “high functioning”. That is a tough call! When is the right time? What DO you say?
    My son has never asked why he’s different. He just kinda accepts himself for himself. He’s a very sweet and smart kid. he’s never said that people tell him he’s weird or anything. The only thing he’s said is that girls don’t like him. But, I assure him that there is at least ONE girl in this world that ADORES him!
    I think that every situation is different and you and your husband will do what is right for you and for YOUR situation. I don’t think it’s fair for anyone to “shame you” for a decision that you’ve made with your child. They’re all unique in their own ways. You’ll find the right time and you’ll know exactly what to say.
    Prayers going out to you!

    Comment by Jennifer Bowers — February 24, 2009 @ 11:53 am

21. Hi Michele..I don’t think my son gets it either !

    Comment by Katie — February 24, 2009 @ 11:59 am

22. I thought the article and comments on when to tell your child about his or her diagnosis was wonderful and a help to me personally. My son turned eight in November and was diagnosed at age seven with Autism. I have been actively working ever since rasing funds and awareness about the spectrum disorders. The words Autism, Asbergers and spectrum disorders have been used frequently in the home as well as my son knows I have worked extensively raising funds for a particular Autism research non profit but I manage to avoid telling my son directly he had such a disorder.This article has helped me greatly and I will begin slowly explaining the disorder and allowing him to understand he is on the spectrum. Thanks All—Trinity

    Comment by Trinity — February 24, 2009 @ 12:07 pm

23. My daughter was diagnosed at age 14 and was RELIEVED to learn she was an aspie. She said she always knew she was different and wondered why. She thinks it’s us “normal” people who are weird, and that aspies are the normal ones!

    Comment by Jan — February 24, 2009 @ 12:10 pm

24. My son has high functioning autism. I tell him most everyone has something – whether it be ADD, OCD, allergies, asthma, whatever. We work on ourselves to be healtheir, happier, productive human beings. Sometimes it can be harder than others. But never give up.

    Comment by joanne pahl — February 24, 2009 @ 12:12 pm

25. The one rule I have always used with both my kids no matter what the subject is that if they are old enough to know the difference and ask the question then they are old enough to hear the answer in a way in which they can understand.
    As far as labelling a child goes….how can they learn to deal with a difficulty/difference if they don’t know what it is. My daughter was finally diagnosed when she was 9 after 6 years of fighting with the authorities just a few months before her diagnosis she tried to kill herself as she thought she was to stupid to be alive (courtesy of the bullies.)Once we got the dignosis and it was explained to her she totally changed. She understood and has learnt to cope. She is now fifteen studying for her English GCSE in mainstream school and attends her special needs school for all other lessons, she stands up in church on a Sunday morning in front of the whole congregation and reads the scriptures out word perfect,she is a St.Johns ambulance cadet and is doing her Duke of Edinburgh bronze award so knowing has helped no end. Good luck to you all whatever you decide.

    Comment by rose hamilton — February 24, 2009 @ 12:12 pm

26. My daughter was diagnosed with Asperger’s at 7. We told her and her twin brother (who is NOT an Aspie). This was very well received by both of them because it finally explained why we were dealing with what we were, ie. tantrums, isolation, odd views and comments. We also purchased a great book…”Asperger’s, huh? A child’s perspective,” by Rosina G. Schnurr PhD. We read it outloud as a family the first time and since then, my daughter has probably read it another 30 times at least. (I actually just found it on the floor infront of her bookcase when I went to look for the author’s name!) Asperger’s is not a bad thing and is DEFINITELY not something to be ashamed of. Sure, we have our tough times, but we have really learned to embrace the uniqueness of Asperger’s. I hope you can do the same! Good luck!

    Comment by Krysten — February 24, 2009 @ 12:41 pm

27. My son is now 12 years old and I only told him that he has Aspergers at the age of 91/2. He had been bullied and called some horrible and hurtful names at a school he had been attending and was asking me if there was something wrong with him. I removed him from the school but didn’t tell him at that particular time about the Aspergers as I felt it would just confirm all the nasty things that had been spoken about him so I waited until he recovered somewhat from it and regained some confidence and when I did tell him it was like a relief for him to know.

    Comment by Diana — February 24, 2009 @ 1:11 pm

28. We live in the US and my son was diagnosed in first grade, age 6, and I talked with him about it from the first. He has never seen himself as having a disability but it helps him advocate for himself with his teachers when he needs accomodations in class. Medication has helped with his processing speeds and creating groups of friends through sports and orchestra has helped with his poor social skills. He is 14 now and heading off to high school with great grades and some friends. I have never been sorry I talked with him about if.

    Comment by Jill McCormick — February 24, 2009 @ 1:14 pm

29. I don’t know the words to use to explain aspergers to my child…any scripts out there??

    Comment by mary blumenthal — February 24, 2009 @ 1:23 pm

30. My son has autism “high functioning” and is 7. We talk around him alot because like one of the comments above, “it goes in one ear and out the other”. I think he knows he is somewhat different than his peers, but we all are different in some sense. I am a Special Education Teacher and I feel that when a child begins to ask questions, then they are ready to understand what you are about to say. “We all have something different about us”, that how I always start off. I am sometimes the first person your child might ask because I am with them when they are being pulled out of class or working beside them one on one.

    Comment by Ashley — February 24, 2009 @ 1:34 pm

31. My son is 20 years old and has never been clinically diagnosed with Aspergers but I know for a fact that he has it. The hardest thing was trying to pinpoint it when he was younger.
    I wish I know what I know now about Aspergers because I probably could have helped him with the social aspect of this disease. He is in his 2nd year of college and doing very well. He has friends and tons of them but not real close ones.
    Is it best at this point to tell him and how could I….I love him dearly and don’t want to hurt his feelings or burst his bubble plus as far as therapy goes he would have to do this on his own as he is an adult. Any advice? Thanks

    Comment by Linda Rogers — February 24, 2009 @ 1:54 pm

32. When I describe my son (nearing age 9) to those who are familiar with the ASD categories, I am nearly always asked if he is an Aspie. He’s a criterion short so he’s officially PDD, but close enough that most of the coping strategies for Aspies are helpful. He has been in “the system” since he was 15 months old and diagnosed with developmental delays, so he has always known there was something different. Hearing me explain it to other people – that his mind and his body and his “real” age and his emotions are at all different places developmentally – has helped him accept it. He is well aware that his mind is his strongest/highest functioning level and that sometimes his body can’t keep up with where his mind is. The professionals may call it processing delays, but he just knows that sometimes he can’t get the words out because his mind is going too fast for his mouth to follow. So having labels doesn’t have a stigma for him, at least not yet. It’s just letters, PDD and ADHD, that are an abbreviation for his situation.

    Comment by satscout — February 24, 2009 @ 2:34 pm

33. It’s really helpful to hear everyone’s views because I’ve been struggling about the same thing myself, how to explain to my 11 year old son about the diagnosis. We touched on it a little bit after a GP’s appointment and he asked me when the Doctor was gonna fix his brain? I explained that his brain didnot need fixing but he’s just different. I wonder whether he got it though because a lot of things don’t make sense to Karl!

    Comment by Maureen — February 24, 2009 @ 2:53 pm

34. When telling a child about the diagnosis of Aspergers, it helps to point out other successful people such as Einstein and Thomas Edison who might be or have been high-functioning autistics. Also, find contemporaries in your child’s field of interest who are “Aspies.” Finally, it helps to let the child know that there are other kids in the school, even in his or her class, who have Aspergers.

    Comment by Mary Minshall — February 24, 2009 @ 3:11 pm

35. I would like to recommend you start with a book which was recommended in a blog elsewhere on this website. All Cats Have Asperger Syndrome is a picture book showing cute kittens but each page has a sentence or caption describing an aspie trait. My 10 year old is still on a waiting list to be formally diagnosed and hopefully get some help a year after my GP referred him and although we have talked with him about how he feels different from his classmates and his anxieties, this book summarised everything in a gentle and comprehensible way. When we had looked at the book and chatted about it he said, “But how does that author know about me?” He has been so much more positive since knowing there is a reason for seeing things from a different perspective and that he is not alone.

    Comment by abigail — February 24, 2009 @ 4:17 pm

36. I recently wrote a four part article on this subject, you can find all four links here;

    http://sites.google.com/site/gavinbollard/about-aspergers/should-you-tell-your-child-that-they-have-aspergers

    I’d strongly recommend that you tell your child. He’s probably already aware that he is “different”. You need to be giving him a reason and putting a positive spin on that difference for is own mental wellbeing and self-image.

    Comment by Gavin Bollard — February 24, 2009 @ 4:24 pm

37. Our son was diagnosed at 7. He is now 9yr. We purchased the books “My best friend Will” and “All Cats have Aspergers”. They are on a childs level and really helped him understand. We have even read them to his class. It has made a difference and he wishes all people knew about Aspergers.

    Comment by Jeanette — February 24, 2009 @ 4:38 pm

38. I have been discussing issues about my sons aspergers and the concerns we both have, since his diagnosis when he was 4. There are only 2 rules, let the child lead and ask questions, which MUST always be answered and keep it age appropriate and don’t burden them with your own issues. to summerise, be honest and be sensitive.

    Comment by Denise — February 24, 2009 @ 5:04 pm

39. There is no ‘age’ to tell because we are all different. My son is a very ‘grounded’ aspie, there are others that float about in their own worlds, we’re all different. When my son was diagnosed, I felt like a brick hit me on the head, ‘I had it too!’ If only I’d known earlier. I’ve spent my life feeling guilty because I could never remember anyone’s names, and people I’d met 4 or 5 times still didn’t look familiar. Just the realisation that things like that are ‘normal’ for an aspie would have made life a bit easier. I can discuss our ‘quirks’ with Max and we can work them out before they become big issues. I’m SO GLAD we both KNOW!

    Comment by Carolin — February 24, 2009 @ 5:45 pm

40. Our son Zachary picked up a book I was reading written by an adult Aspie, read the back cover and forward. He asked if the book was about him? I explained to him what made him special, he is now 10 1/2 and does well in his small private school his friends accept him for who he is and all of their differences. We continue to love, praise and pray for God’s love and guiding over him and us….

    Comment by michelle landreneau — February 24, 2009 @ 6:33 pm

41. Tell him immediately! When I finally figured myself out at the age of 49 it was SUCH a relief and has lead to me having more social confidence and some Aspie pride. Before I used to wonder if I had simple schizophrenia even though the diagnosis did not quite fit. Simple schizophrenics don’t hallucinate but they are not interested in any thing. I was interested in a great number of things, just not hair and makeup and boys like a neurotypical girl would have been. So I did not know what I was and I spent a college education amount of time reading everything I could get my hands on about mental health trying to figure myself out. I didn’t dare go to psychiatrists other than for antidepressants because I truly feared being committed and locked up with wall to wall chain smokers. I had been threated with this when I tried to get help for my sleep apnea. Now I am getting better treatment at the Doctors because I can explain why I come across as weird while before many thought I was crazy and/or retarded. I have more social confidence because I can explain to people that I just can’t read or respond to their facial expressions and have trouble making eye contact, and that this doesn’t ‘mean I’m crazy, stupid, disinterested, cold or lying. What a difference this has made! Believe me that young man knows or will soon know he is not, “normal” and it is going to cause him to stay awake at night wondering about himself. I sure did! He needs to be told and as soon as possible to help him adjust. Tell him he has what Bill Gates, Albert Einstein, Tesla, Oppenheimer, Bill Murray and Stephen Spielberg have as well as many folks at NASA and Microsoft. Explain to him who those people and organizations are. Explain to him that no one’s brain is EVER empty. The fact he can’t read or respond to facial expressions means something else very interesting is going on in his brain instead, and it may be a unique gift that can bless the world immensely if he manages not to let the worlds steal his light. If the bullying gets too bad, home school him because no one should have to put up with that and school systems do NOT try to stop it no matter what they say. I have known many cases where some of the teachers and principles were in on it and encouraging it! Columbine was a case like that. The Principle did know what was going on. One young man was being harassed because he was Jewish not because he was a Geek. His mother had a lawyer write a warning letter and for THAT young man the harassment stopped overnight! So they could have stopped the “trench coat mafia” from being bulled too. They did not. The Principle and school was sports crazy and detested the nonatheletic. In Middle School I was treated horribly. In High school I was treated like a wise fool, tolerated to some extent, even respected sort of. I had not changed. Most of the Kids were the same ones. What changed was the official school atmosphere and attitude towards those who were different. Florida has a public Internet school any Florida resident can use for free and people in other states can pay to join. The curriculum is actually more rigorous than what he would get in a brick and mortar classroom plus there is a lot more personal attention and the ability to go at one’s own pace, not being held back where he is gifted and stressed and hurried when he is behind. It also eliminates what was my biggest hurtle to learning; teachers who would show us what to do on a blackboard instead of talking us through stuff. I can not learn that way because I lack the mirror neurons to figure out where the Teacher’s hand was. By the time I had figured out that his or her hand was in one spot on the blackboard it had been several other places. This may be slowing many autistics down academically especially the audio autists that are not visually oriented. I was given no special help either because one teacher told me to my face he could only give special help to so many and it was more important to help the football players keep their grades up than someone who was not on any team and didn’t even come to the games! Now I wanted to become a scientist. The footballers didn’t. Many of them didn’t even care about their education other than to play sports. It didn’t matter. Later second hand smoke drove me out of college and even votech school because it made my sleep apnea much worse and I was having 24/7 migraines from sleep deprivation.

    Comment by Elizabeth Hensley — February 24, 2009 @ 6:38 pm

42. Why don’t you wait until after an episode of asperger’s difficulty occurs and sit down calmly with how it could be handled differently. You don’t have to tell them EVERYTHING you know about the subject all at once, just keep the lines of communications open. Don’t make it sound better or worse than it is- just different. Your son will trust you to come back to talk to when he is ready to hear a little bit more.

    Comment by cathy — February 24, 2009 @ 7:11 pm

43. I feel that I must warn you that a child might have a meltdown( a massive tantrum) if you reveal the diagnosis. After that, things will cool down, but he might be in a state of shock, anger and confusion…

    um , I am just saying it from personal experience. I have aspergers and when I was told, it was not a pretty sight… I screamed, cried and yelled…

    Comment by geraldine — February 24, 2009 @ 7:16 pm

44. i like the idea from cathy, my grandson is in his own world at 7. although very bright he could care less about friends at school. however he loves to play with his 5 year old brother and little brother is very aware big brother falls apart easily. i am worried about next fall when they are in the same school. bringing it up to both when they have a difficulty will be perfect. thanks

    Comment by Becky Mitchell — February 24, 2009 @ 7:25 pm

45. My son is 12 and he was diagnosed at 6. At the time I told him we were getting him help for the challenges he was facing in school. The school was aware that I did not tell him about Aspergers per se- it wouldn’t have meant much to him at the time. We did make sure he understood that we were there for him and he was encouraged to self-advocate. He had a safe quiet place to go to and a fantastic learning resource teacher who helped him through many ups and downs. He has gone from a child who couldn’t cope and would barricade himself in any small space he could find to a Grade 7 student who consistently gets A’s and B’s in most subjects. (not Gym though!) He had an EA until Grade 5 and the last year and a half he has managed on his own. (with his trusty laptop) He does have a few good friends and the kids in his school for the most part accept him as he is.

    My husband and I are thinking about telling him because now he could understand that it is a gift that comes with challenges and not an excuse to hide behind. We felt that he wouldn’t try at all if he could just blame problems on being an Aspie. We don’t feel he has been lied to – now we will just give him another word to use. I am so proud of the things he has accomplished over the years!

    Comment by Debi — February 24, 2009 @ 7:58 pm

46. Our son is just going through his diagnosis atm, at age 9 (almost 10). He was already seeing a psychologist, so her asking questions wasn’t strange, but when we went to see the paediatrician and he spent an hour asking my son and I “strange” questions about school and home and foods and what he was like as a baby, I felt I had to provide my son with some explanation. I told him that his psychologist thought he may have “a thing called Asperger’s Syndrome”, and that the paediatrician agreed. I told him that may be why he had trouble making friends and a few other things…as with most things his response was “OK” and that’s it. I told him that the reason we were seeing the doctors was to see if we could do some stuff to make his life a bit easier and left it at that – as other’s have mentioned, he is currently living in oblivion – he thinks everything is perfectly normal and doesn’t seem to notice or care about his odd behaviour of his lack of friends etc. For my part, I think if we say the word so he gets use dto hearing it, and compare it to myself taking anti-depressants (major family history which suggests a simple chemical imbalance that is fixeed with meds) or wearing glasses. It’s the same way as we talk about people we see in wheelchairs or anything else, as others have mentioned – we are all different and everyone has their challenges, there is no such thing as “normal”…

    Comment by Tammy — February 24, 2009 @ 8:32 pm

47. My son is 6 and I have started to talk to him about Aspergers because when he does things that are destructive or harmful, his response is that his “brain doesnt work right” and “makes him do what he shouldnt do”…so I have explained to him that he does have a brain that works differently than other people and that is okay, but he will have to work a little bit harder to do the right thing. I have explained that because he is very smart, he can learn to teach his brain ways to control his feelings when he wants to lash out. He seems to understand this even though he may not be completely ready to hear that he has AS.

    Comment by Abbi H — February 25, 2009 @ 12:58 am

48. Our aspie son was formally diagnosed aged 9yrs after many years of maybes. We told him about AS when he began to ask “why am i different?” We used the book “Can I tell you about Asperger Syndrome?” By Jude Welton. I had my eldest daughter read it first (she is nearly 12)as she kept asking “why do you treat him differently?” She became aware of his AS about 6 months before we told our son. After sitting down with our son and explaining AS with this book he was so relieved that there was a reason for how he felt.His teacher also used this book in the classroom so the other kids could understand. One child even came up to my son and said “I’m sorry that i have been mean to you I didn’t know” Of course there are those who use it to set him off.
    My advice is wait until your son starts to asks questions remembering that each child is so different. If you can get a copy of the book.
    Good luck with it.

    Comment by Andrea Dryburgh — February 25, 2009 @ 1:06 am

49. Hi, I worried about this question too – my son now 10, was diagnosed with Aspergers and Dyspraxia last year, both his dad and I just didn’t know how to explain to him. He knew something was different with him, as his twin brother and younger brother didn’t have the difficulties that he had, and he noticed big time. He saw us reading on various occasions books on the subject and so one day asked what I was reading, I told him ‘Asperger Syndrome, the Universe & Everything Else’ he asked about it and I explained to him that it is written by a young boy who has the same difficulties that he has(it’s by Kenneth Hall). He just accepted it with and “oh, so that’s what’s wrong”. It made me laugh as I had worried so much about explaining to him but he was fine, in fact he seemed so relieved to know what was going on with him. Since then he has asked us many questions about Aspergers and we answer as simply as we can for him to understand. We hav’nt bombarded him with information just answered his questions as he has asked, and he seems happy with that. Above all we tell him that he just has a different way of thinking and doing things and that makes him unique just like his brothers, and that the world would be a boring place if we all thought the same.

    Comment by Diane — February 25, 2009 @ 6:20 am

50. My son at age 10 when asked by a Psychiatrist, what would you change …if you could change ANYTHING in the world….His reply was…MY BRAIN I would like to fix my brain…cuz it don’t work right…At age 14 He was relived to find out he was not alone..and the reason his brain was ” different” was due to something called Aspergers..
    He giggled and said my Ass has a burger?
    Yep sometimes my lil Aspie has a sence of humor!
    I would have told him at age ten but I did not know! We had a rough time getting a diagnosis.
    we made the mistake of trusting the school Psychiatrist, he said My son just marched to the beat of a differnet drum..no need for labels…Yeah beacuse if they had labled him Aspergers…they would have had to put a program in place that met his needs. But that cost money…so better to let him muddle his way thru..I wish i knew then what I know now!
    Hind sight is always 20/20.

    Comment by Patty — February 25, 2009 @ 8:43 am

51. My son is 13, and we told him about his Asperger’s when he was going in to middle school. We, my husband and I struggled with it, especially my husband, because he didn’t want our son to be “labeled” Sam knew he was different, and when we told him, he was relieved. I had purchased some books about “Ben’s bees” something like that, because Sam has a fear of bees as he was stung once. He read the books and recognized the boy in the book as having some of the same issues he had. Anyway…when he went to middle school, we didn’t want him to use Asperger’s as a crutch, as he does sometimes. but, mostly, he has an IEP which gives him the services he needs at school to thrive. He has a 2 really good friends, thank God! And is doing well, by all means, wait until your Aspie is old enough to understand the concept. Not at 7 or 8, but around 11 or 12. Thanks, Sue

    Comment by Susie Orr — February 25, 2009 @ 1:14 pm

52. Thank you to allandnn and Elizabeth, our adult Aspies. I love hearing about your past experiences–it is what helps me the most in my decision-making as a parent trying to facilitate success and protect my son in the present. I am glad you are part of the forum.

    Comment by Sandy Kabel — February 25, 2009 @ 1:48 pm

53. We told my now 10yr old aspie about his diagnosis when we felt we knew enough about the disorder to answer his questions. He was 9 and didn’t ask any questions. He’s refused to accept any therapies or help for his social difficulties and depression/anxiety. We’ve learned to walk on egg shells and try to head off major melt downs. Just this past weekend he got very upset and ran away (in the dark) and worried us all sick. The next day we sat down to talk about what had happened and this is when I learned something very important! He REFUSES to accept his diagnosis! That’s why he’s never accepted our help. He doesn’t believe it’s true. What a shock. We are still reeling and not sure what to do. I guess telling your Aspie won’t always work. My husband says it’s just a “label” really so it doesn’t matter if he accepts it. But we both agree that it is impossible to help someone who doesn’t believe he needs it!

    Comment by Tricia Hackworth — February 25, 2009 @ 2:46 pm

54. Thank you to all before who commented previously with their experience, strength and hope on this matter.

    We are currently struggling with these issues and could use help regarding “how” perhaps more than when. Specifically, we are concerned with, amongst other things: labeling issues including correctness, potential justifications by the child, issues of self-esteem (any way), but most important would be as stated a “age-appropriate” manner, reluctant as I am to use that specific terminology based on appropriateness of it as a bearing.

    My daughter, age 6, was diagnosed with Asperger’s syndrome last year by a specialized psychologist, after concerns were voiced by her school about repetitive movements approximately a year prior.

    Both my wife and I knew from an early age that she was different, likely gifted with learning disabilities as she is extremely high functioning in most areas, but we struggled and continue to struggle with the issues for a variety of reasons some of which I allude to here. I should note that she has understood for a while that she is different.

    A secondary evaluation by a neurologist said that Asperger’s was over the top and that we just had a quirky kid. On that note, she, more often that not, fails most of the traditional tests, e.g. she has above average classical empathy, handles change fairly well, although resists it emphatically, and is popular in kindergarten (at least for now) despite certain social issues some of which likely (also?) fall into an ADHD category.

    Then, there are other times that it is so very clear to me…the interests and/or obsessions, changing as they may be, eye contact (although this is improving) and the occasional bloody tantrums. It has forced me to redefine empathy in the manner that Dave does…e.g. that others have different interests than dragons, turtles, Pokeman…e.g. YOU. Taking her off milk seems to have led to improvement.

    It is painful for me, amongst other reasons, because I see and have seen so much of myself in her, more in fact in some areas and therefore can’t help to wonder if I have Asperger’s syndrome too. Or, if I’m just ADHD and/or dyslexic, ergo..quirky too. I also fear what the future may have in store for here as I suppose most parents do, spectrum and/or otherwise. Of note, I am a masters level scientist with my own company, but can’t help but wonder the degree to which my past issues (with tendency to focus on the negative) might be explained by appropriate diagnosis.

    Unfortunately, I can easily recognize that the ethical issues involved are vastly more complex than the binary manner in which they are presented by certain commentators. Certainly, if a child asks, they are entitled to an honest, comprehension-appropriate answer (whatever that may be). Aside from this, where good faith becames bad faith, I’m afraid to say to my fellow Aspies and their parents, is somewhat grey. I think we all understand that age is a tepid barometer, at best based on what we know about non-parallel developmental aspects of the condition. So, if anyone has any specific advice here, I’d been happy to comment on their circumstance as my ability to be objective, regarding my own circ is obviously lost.

    What I can say, if not already implied, from personal experience, is that lack of diagnosis and in hand appropriate understanding of circumstances leaves the affected child / adult in very dangerous places.

    Respectfully submitted…

    Comment by Jon G — February 25, 2009 @ 5:54 pm

55. I told my son, along with another proffessional, that he had aspergers. I expected alot of questions or for him to be upset. He is 10 by the way. All he did was make a joke about it. He knows he’s different. We make a little story book for him and read it when we told him about the aspergers. But if you really think about it you are giving the child help in and out of school, friends and family and teachers know he has aspergers, so why shouldn’t he know. It will be rougher down the road if he finds out during his teens years when the peer pressure starts and he starts to notice he has a hard time making friends. So it is better he knows now so you can start to work on things with your son and explain all the “why’s” to him as best you can.

    Comment by cheryl — February 25, 2009 @ 7:12 pm

56. I told my son when i was told, I felt a lot better knowing what was really wrong with him so did he, at first he was diagnosed with add and odd which was not right. We felt a lot more at ease with aspergers then the other as it is not his fault for his problems that he has.

    Comment by Terrie — February 25, 2009 @ 8:01 pm

57. We told our grandson when he was 11 years old as I had just finished reading Tony Attwood who said to tell your child about AS and on tht sme page it had a list of a 15 year old AS boy’s likes and my grandson said I’m just like him so I let him read the page which was talking about how their class peers readily accept a joke from a child that can’t tell jokes properly but when the Aspie tells a joke everyone moves on or doesn’t say anything. He liked the part where Bill Gates was A.S. and the Pokemon creator was AS. The thing is if they are really AS, they recognise it. The pediatrician believed his father was AS as well and that explains a lot.
    My youngest son was dianosed with dyslexia and he ws so pleased to know it was only that and he was a mental.

    Comment by Lillian Carde — February 25, 2009 @ 10:02 pm

58. In 28 it should read at the end “and he was NOT a mental”

    Comment by Lillian Carde — February 25, 2009 @ 10:04 pm

59. My daughter 10 as yet doesn’t have a diagonis as an aspie. We decided not to go through with it because I get her as much help as I can and always have. Her brother has autism(PDD(NOS)) so she is paranoid that she is autistic. I have had her tested by speech therapists, psychologists, psychiatrists so I know where she is at. We have always seen a fab speech therapist and OT so she knows she needs a bit extra help and is quite happy to get it.

    Comment by Leesa — February 26, 2009 @ 1:09 am

60. My son was diagnosed at age 10. We did not tell him right away–the psychiatrist thought it would be best. Eventually he noticed all of my reading material referring to Asperger Syndrome. At age 12 he said “that’s what I have, isn’t it?” I indicated that I thought I had it and noticed the same traits in him (I was never formally diagnosed but I am sure I do have traits). He knows he doesn’t act like other kids and is very depressed about it. He hates that he has Asperger’s (hates the name too) and although he is on 2 different meds for depression and axiety, is having a tough time accepting that he is not neuro-typical. He doesn’t have many friends (1 and she doesn’t hang out w/ him that much). He desperately wants friends but is too shy to make any. He thinks the other kids think he’s weird. It makes me very sad that he’s so lonely. He gets very angry and takes it out on his family. He has frequent meltdowns and when we can finally wrestle him in to time-out (usually for hitting his sister), he calms down but feels remorse for acting out.

    Comment by Daisy — February 26, 2009 @ 10:08 am

61. My grandson is 4, My wife and I have suspected a diagnosis of Aspergers for a year now. But, our daughter and her husband are reluctant to listen.
    He is seeing a child psychologist now, but, There has been no diagnosis as of yet.

    Comment by Bill — February 26, 2009 @ 2:56 pm

62. DAISY, judo,swimming club, drama, athletics are good things to slowly introduce, don’t make a big deal about it though, it will take a long time. There are internet sites for aspie kids to talk, just ask him to take a look. We have written down the signs of getting mad; clenched teeth, fists, holding breath, yelling, so he can recognise when he’s getting mad. Then we have a list of instructions to read and follow when it occurs; eg go out to trampoline and jump or go play nintendo ds. When calm come back. We have a huge sheet of alternative things to do for different situations. Also evening primrose oil is a good supplement. All the best

    Comment by Leesa — February 26, 2009 @ 8:26 pm

63. I think you should tell him gently and age-appropriately because he may KNOW he’s “different” from others, but be confused as to WHY. Whether he tells you or not. His peers may bully him and call him weird or stupid or worse. I am 45 and I self-diagnosed 8 months ago. Around the time I found this site. In a way it was frightening, but in another way it was the end of a long search for what was “wrong” with me. I no longer see it as something terribly wrong, but maybe something special. My head is still spinning from the implications and I am only starting to learn about this condition. There was no mention of any such thing when I was young. I was perceived as many things, most of them negatively labelled, especially by those my own age. I had no defense for why I acted differently from them. I excepted the fact that I WAS weird and didn’t belong. Self esteem for me was only an unreachable dream. I just kind of existed up to now, floundering my way in a society that makes no sense to me. Tending to avoid most social situations whenever I can because I am clueless. I guess there is some hope that even at this age I could be taught some social skills, as it is lonely when you cannot relate closely to others.

    Comment by Roger — February 26, 2009 @ 8:53 pm

64. In regards to Adult Aspies.
    Male ealry 50’s, just dx’d.
    Too say life is a [ mystery is a true statement], but Trudy did get it wrong, many of us, have bits of this and bits of that, which confuse some of us, searching, to try and [ understand our journeys], and where we are this for me, may just be me], that no other Adult. Has this state of constant confusion, OCD plays it’s major parts in and thru my life as a Aspie.
    Psychotic medication, helps in the sense of [ sleep], compared to days of old, when sleep came naturally, for me, is a thing of the past.
    Aspects of others posts, are not part of my ability to be fluent in the words, I want and need to convey, so I must cut n paste, others words, to say this is me and what I go through.
    It’s a [ crap of a way too go forward ], but it has to do. Counting anything and everything, helps alay [ fears are profound PTSD], is a result of the endless ] not knowing or understanding], prevelant for me, my friend Wejing allows me use of her, list to say part a very small part, of the [ world of confusion that this Aspie ], continues to learn and grow, but at my rate not of the average persons out there whom really are just looking into a looking glass that rarely reflects back the true inner world of a Aspie].
    Research oh please, those of power, please do more research, FMRI have shown some major insights, but more is needed and as a worldwide interlink of said research so all Aspie’s young and mature, get a chance, to show beyond that of our behaviours, and please excuse my non, grammar correction, but that is me. Another may say what they need to say, in a paragraph, imagine 8-10 pages to do the same, CBT and Alpha wave cd, are a major help, but just small tools, in a armory that is less used, of skills?
    Hope this little insight, helps some of you mums n dads n siblings out there reading this, nothing is ever written, that is so. It is the learned sense of, ['Growing up'as beings], whom have a tad harder insight at being a human being imho.
    Skye

    Comment by wejing — February 26, 2009 @ 11:33 pm

65. tell him as soon as you think he can cope with the information, my son is 16 now, i have been fighting with everyone who would listen trying to him diagnosed since he was 7, i had to go to the DORE programme privately for any sort of diagnosis, he is struggling comoming to termsith his diagnosis as he knows he is different and cant understand why. i think if i had time when he was younger i could have prepared him better, he was only diagnosed last year normal teenage hormonal problems added with aspergersis a nightmare for us as a family but is worse for Andrew

    Comment by wilma rafferty — February 27, 2009 @ 5:46 am

66. We did not realize our son had Asperger’s until he was 31. He was constantly in trouble and blamed for everything.I thought he just had a slow start and when he reached a certain age, it wouldn’t matter or be noticed by anyone. One day we were told about someone who went through similar struggles with social skills. He spent many nights crying himself to sleep with the idea he is retarded. Still it was good news to find out he could get help, and instead of getting mad at things he couldn’t control we could learn to talk. We are now able to seek the proper sources for support. He does try to use it as an excuse, but we try to help him sort out the difference of what he can and can’t expect of himself. While there is much to learn, he is beginning to accept help. He has an eight year old son that shows all the signs of having the same problem – even more severe. Hopefully he will get the help he needs soon.

    Comment by Kathy — February 27, 2009 @ 7:46 pm

67. For us it began in Kindergaten. My daughter couldn’t understand why she was the only child that could read and do math. I told her that not all children were at her leval and they might not have mommys that teach them. Her reply was… “MOMMY, my brain was smart when I was 4, so why isn’t their brain just smart?” We then explained to her that her brain worked a little differant. I don’t think that she fully understood until just this past yr. at 7yr. She of course doesn’t fully grasp it, but has asked a ton of questions and understands more than we know. She comes up w/ analagies to explain differances or problems. We saw a shirt on a website that said Aspie squish Team. She busted out laughing and said, that’s cuz we like that huh mommy, like when you squish me up and make me laugh when I’m grumpy? (I tell her I’m squishing the grumpy bugs out) We have also discussed that at some point people may be mean or make comments but that is because they are ignorant and do not understand what it is like to have Aspergers and that is why we need to teach people about it. She was sad because she couldn’t understand the concept of people not accepting someone that was differant, and not feels it very important to tell people about Aspergers. We always tell her that Aspergers may cause things to bother her sometimes but it also makes her special and able to do things she wouldn’t be able to do without it. She at 7 in no way feels labeled or differant in a bad way. We preach that everyone is differant wether they have something or not and you have to respect that differance. To her having Aspergers is no differant than the fact that I like chocolate ice cream and she likes vanilla. Yes she does have some accomadations to make life easier but we also stress that just because she has this does not mean it’s an excuse. It doesn’t give you a free pass in life and you cannot use it just to get your way. We also have to explain choices… yes none of the other kids wear headphones during drills or PE and they might laugh, but which is worse… that or the sounds that hurts your ears. If it bothers you worse what they will think, can you cope w/ the sound w/out a meltdown.
    I’m very glad we don’t hide it from her. Most of these children are smart enough to know they are not like the others. Even if they dont care or act ovblivious, they know. Know there is a reason why, is in my opion a kind of comfort. “there is a REASON why I’m like this.” And really you don’t need to necessarily sit down and say, “OK, you have Aspergers and this is what it is and what you’ll be like” Rather just not hide it. Don’t go overboard but do explain to people about it. Don’t tell them this is how you’ll be, but when something comes up say, “well this is part of Aspergers and why” just be open an communicative and supportive. Don’t pity, don’t look at it negatively. I have found w/ others it makes life much easier to be forward and explain. There was a little girl in our class that thought my daughter didn’t like her because she didn’t talk to her, which my daughter actually loved this little girl. I explained Aspergers to her mother and then w/ her and now they are great friends and even when Keeley w/draws on days, the little girl knows how to deal w/ her now and not take it personally. I always believe not only just w/ Aspergers but w/ everything, that it is vitally important to be completely honest w/ your children. Even if it’s something that may be hard to swallow at first, they will be glad you didn’t hide it from them.
    They have the disorder and it’s not going away, regardless of wether we want to accept that fact or not. They will have to know at some point in their life. Might as well just know from the start. Most people w/ Aspergers I find not to accept surprises well!

    Comment by Karla — March 10, 2009 @ 1:20 pm

68. 8 Months ago my son was diagnose with AS, not Know much about it yet, im still trying to accept it. but im confused in one thing, i have read that Aspies childrens doesnt have problems with their comunication skills, but my son has ecolalia, and other language problems.i even thought he was an autistic boy, but not aspergers. but his social skills are very variable, sometimes hi interact with others but if there is to many he is apart, he plays a lot with his baby brother , and care for him.he loves to kiss and hug, he is not afraid-aparently- to knew people, and every now and then he even invites another children to play with him. The tantrums are ocasional but i manage my self so it ends very quickly… he responds to his terapys very fast.. even the profesionasl who works with him are very surprise…
    i read a lot…dont want to be confuse…can or cannot the aspies have language problems…

    Comment by priscilla — March 28, 2009 @ 3:01 pm

69. In answer to your question, yes. I am a Speech-Language Pathologist with a 7 year old with Asperger’s. She was difficult to diagnose at first because of her language delays due to frequent and severe ear infections. As her language skills improved we began to see that her characteristics fit in more with Asperger’s Syndrome than Autism. Hope this helps!!
    Lynda

    Comment by Lynda Maniscalco — April 2, 2009 @ 10:53 pm

70. As a parent of a child with Asperger’s, and an aspy myself, I want to add one caution:
    I encountered a young boy who behaved like a wild animal, and when I confronted him on his behavior, he said “I have a syndrome” as if that was supposed to excuse it.
    Long story short – no one seems to expect him to behave to his potential because they don’t realize his capabilities are better than what they accept. This is hurting him far more than helping him.
    I find it frustrating that adults assume he has to behave like a barely trained animal when he could do much better.
    He’ll never be “Normal”, but he could be so much more than what he will be if his parents continue to let him grow up with zero discipline.
    It’s okay to tell the child, but don’t let it be an excuse for not living up to his or her potential. Finding the right balance between expectations and allowances is not easy, but kids often rise to expectations when given the chance, so don’t miss the opportunity for them to grow and achieve.

    Comment by Mark 42 — August 19, 2009 @ 2:34 pm

71. Check out Big Brother 11. I thing Michele has asperger, she is really smart, not so good with people. My son has asperger.

    Comment by ROBIN — September 2, 2009 @ 10:07 am

72. How do I tell my 7 year old child she has Aspergers??

    Comment by Peta — October 13, 2009 @ 5:46 pm

73. We talk to our 7-yr old son about his “brain wiring” – that the same thing that makes him brilliant at maths and logic are the same things that make him feel like it is difficult to play on the playground. And we point out the way his other friends have differences too, so that it doesn’t feel like it is just him. That he is a unique individual, not just a disorder – as is everyone.

    Comment by Tara — November 10, 2009 @ 5:18 pm

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