What, when and how to tell your child that s/he's autistic

There is a great book available from autistic soceity called

I have autism ... whats that ?

its really good. our son who is  now 12 has had it a couple of years and he has much better understanding of it.

Claire x

Hi all,

My son was diagnosed 3months ago, he is 13 and had been through primary school and 2 years of secondary without any support. He was struggling greatly in school academically and somewhat socially. He asked me to get him assessed for dyslexia as he wanted to know why he was stuggling so much. i went private for an assessment as my gp met my son and told me 'there is nothing wrong with your son' and 'was i tring to push him academically' It took me the best part of a month to get myself together again after that meeting. The school psycologist said he felt he did not have aspergers but wanted to assess him for adhd, but my instincts told me it was aspergers so i went private.

At the end of the private assessment the therapist whom was lovely asked me did i want to tell him, i asked her to tell him with me in the room so she could answer any questions he might have. She began by talking about the fact he had a very high score on his visual assessment and how great this was and how most people dont have the talent to remember things as well as he does etc, then explained that his audio memory is a bit weaker so the visual side makes up for this, like someone that is blind uses their other senses more. She said the reason for this is that you have aspergers then spoke more about the things that are a part of this e.g his sense of smell, not liking changes etc. Because he loves drama and acting she told him about actors with aspergers like Mr Bean and i think that also helped, that he didnt feel alone.

I worried about how he would react to being told and i think its down to how it is told. About a month after he was told i commented to him that his mood had been great lately and asked him was it because he was off school, he replied "NO, its because i know now i have aspergers and so will everyone else"

Hello everyone,

Just thought I would put a link here to some NAS info about telling a child about their diagnosis:

http://www.autism.org.uk/about-autism/all-about-diagnosis/diagnosis-the-process-for-children/diagnosis-telling-a-child-about-their-diagnosis.aspx

Lots of useful resources are listed there too. I hope that's of some help.

Sandra-mod

My son is  10 and was diagnosed 4 years ago, i have always been casual about

his autism and have spoken to him about it. He never took any interest but i thought it would be easier if we didn't treat it as a major issue. Skip 4 years, due to his asd becoming more pronounced we decided to send him to a specialist school. When he went for his visits he was nervous (of a sort) and for the first time that evening he asked about his autism. " what is autism and why am i it" were his words. (good title for a book) i was speechless i had rehearsed this so many times and now because he asked me i didn't know what to say. I hope i gave him some words of comfort. I am trying to think of some motivational posters i can draw to put in his room to show him that he has a fantastic future and he is a fabulous person who just happens to have asd. I could probably do with some help.

My daughter was diagnosed with Aspergers last year aged 11.  She was just about to start Secondary school and we were advised not to tell her straight away as there would be a lot of new things for her to get her head around as it was, without this on top.  However, she had such problems with relationships in her primary schools (we moved her from her first one as the school were completely unsympathetic to our concerns/her behaviour, but that's a different story) and I was concerned she would have problems again and that it would all spiral downwards so we agreed to tell her sooner rather than later.  We decided that it would be best coming from the lady at CAHMS as I was expecting a really negative reaction from my daughter as she had venemously denied that she was having any problems even though it was painfully clear that she was.  Anyway, her response to the diagnosis blew me away.  She was very calm about it and asked very reasonable and sensible questions.  Although I'm not sure her new friends understand what AS is (I'm still trying to get to grips with it), she was at least then able to tell the ones closest to her that she has it, in the hope that it will give her a little leeway if she behaves a little immaturely.  Over all, I think and hope that knowing she has AS will help her understand herself and help others be more tolerant.  So for us at least, I believe that telling her has been a positive move.  And whilst the T-shirts or whatever aren't really necessary for us, I don't think they can be seen as a form of bullying at all if it gives your kid a break and allows them to be themselves.  Sorry for rambling.

Hi,

My daughter is 11 years old, and just diagnosed with Aspergers and we had been advised not to tell her or anyone else about her diagnosis as she was getting on so well at school. Its been a nightmare her not knowing and we have been unable to get any help at all as all her 'difficulties' manifest themselves at home. Shes really angry and aggressive, often violent towards us at home but somehow manages to keep it all together at school.

This week the school found out about her diagnosis as the 'DLA' people wrote to them to support our claim and they werent happy they hadn't been told. Now that they know we're going to tell our daughter as well but have no idea how to go about it. Shes likely to become aggressive towards us as a result but its for the best. I think the advice we got at the beginning was wrong and I regret not telling her at the time. We desparately need some help with her behavioural issues and it will be such a relief to tell someone so we can get some help before we all lose the plot completely. Keeping it a secret was a very bad idea for us.

Hi there

Myself and my ex husband told our DS whilst away for a family break in a caravan.  He was diagnosed before his 6th birthday and shortly after we went away for the break armed with one particular book.  Its title 'Friends Learn About Tobin' - can be bought on amazon.  It's a lovely book about a train with various differences who's friends learn to accept and play with him.  All we did was read the book as a family and DS said 'Tobin is a bit like me mum isn't he' and this opened up the conversation.  It wasn't a heavy conversation and it lasted as long as DS wanted it to.  There is also another book 'Tobin learns how to make friends'.  Both books are going to be used to be read in his classroom soon because whilst they don't explicity mention Autism, they speak about some of the many differences both positive and negative.  Hope this helps :-)

Tell them when they ask, dont label them with shirts, you are merely bullying them even worse than the bullies can, and causing further bullying by such acts.

When something comes up that they can do better because of the autism, tell them they can and how, if they can't do somethign because of it, just tell them they cant.

Soon enough if you get them meetings with therapists when issues get a bit worse or easier to control, they are trained to tel lthem, rather than label them which would lead to:

• hatred towards you seeing you as a bully
• being bullied even more
• possibly having teachers report you for abuse, as I would had I been their teacher!

The only issue I would like to raise is not your childs reaction.  It is that of the world around them.  I speak from experience.

The problem is not your sons, it is everyone else alienating him.  This is going to happen anyway due to his lack of social skills, and naked assertion of his own agenda's and urges.

Telling him will explain that he has a condition that cannot be helped, and that he is differently minded rather than wrong.  Mad, mental, stupid...I had the lot.  It hurts.  I only got diagnosed at 41.

It varies from individual to individual, social scenario to scenario.  I would recommend a good social core-team.  Specific close friends to play with, a safe area in school with the same, dependable people and generally be careful about other children traumatising him due to his open-autism declaration. 

In life, somethings cannot be avoided.  We all have to learn to take knocks, even if we cannot understand what is going on around us.  You parents just cannot shield your vulnerable children from the real world forever.  It is cruel, it is awful but that is life.  I am sorry that we all know what will happen in the playground, but you must explain to your child daily why this all is.  That will not entirely help, but at least they will know why. 

I am sorry I cannot be more helpful.  I just carried on through school getting hurt and accepting it.  In later life, you learn how strong you are that you can recover rather than deal with it at the time.  The Neurotypical world can contain great kindness and beauty as well as cruelty. 

My son has been able to read since he was about 16months old. I made the mistake of leaving some mail laying around in relation to his Autism. At five years old, after reading my letter, he asked me what Autism was and why he had it. It was a shock at the time, I worried that he was too young to know, but, it has actually been for the best. He has known he has Autism and it helps him make sense of his world. As he has got older he has been able to understand his condition, and at times, explain it to others. 

I am in favour of the T-Shirts and cards, not only does it help curb all those stares and tuts we all know so well, but it is spreading knowledge and understanding of ASDs.

Obviously everyone is different and every family is different.  But I personally think we have a duty to tell.  I can't remember the exact time I spoke to my son that he had autism but I am always very positive when we discuss his diagnosis, all the qualities he possesses because of his autism.  I think its important for me as a mother to focus on these qualities also.  I see autism as a gift, I know we would change things if we could but I feel we have to stay positive.

I wish the T shirts were about when my son was small and I read one comment about all toddlers being difficult etc, well I'm sorry I disagree. I have 4 children the youngest, now 17 years has autism he was the most difficult and challenging during those early years, even though I love him dearly of course and he is the light of my life! AS for the cards, I have used them and always carry them and my son carries his in his wallet.  I have used them at the hospital and the hair dressers!  They have been very useful!

My father passed away 3 years ago now, he had mental health issues and many problems, and I am convinced he had ASC, I wish he could have been told he had autism and that we could have helped him and understood him better, instead he lived his life never knowing.

I see diagnosis as a sign post and not a label, although didn't come easy in the early days!

Best Regards for 2011 to one and all!

There is an Arthur cartoon that has a character with Aspergers and the cartoon explains what Aspergers is. You can get it on youtube (its in 4 sections) and is called When Carl met George - George and the missing puzzle piece. I have to confess not to have watched it all through but I heard of a child who watched it and ran and got their parent to watch it as they figured out their own diagnosis.  

I'm afraid we left it too late.  We were in the same quandary as yourselves and just didn't know when or how to approach my then 8 year old son who has Asperger's Syndrome. Crunch time came that Christmas Day at my Mum's. She was doing lunch for 17 of our family and as more people turned up and as it got noisier and more crowded and everybody wanted to talk to him, he gradually got more & more agitated.  This ended with him under the dining table while people were eating.  He was banging the table, making really loud nonsensical sounds and kicking me.  He ran upstairs in a really distressed state but wouldn't let anyone near him. An hour later he shouted for me.& I went up and he was sobbing his heart out because he said he loved me so much so how could hurt me like that.  He wanted to know why he was such a bad boy and why couldn't he stop himself and saying that his heart was black.  I immediately shouted my husband and we had the discussion there and then.  I can't say it's been easy but we had no idea he thought he was evil (his word) because of the things he did.  Sorry for rambling Mark & I can't really advise you because only you know what the best is for your kids.  Just that for us it came as a shock that our son was suffering in his own world thinking all sorts of things about himself and not able to verbalise his feelings.  At least he now knows why he acts like he does; he just has a condition and lots of people are also different in their own way.  We wished we had told him before..............but there are so many "what ifs" and guilt isn't there with our kids and it's hard not to beat ourselves up over them.  I hope you are able to come to a decision Mark.  Please let us know what you decide and how it goes, whenever you do tell her.

I have found the I'm not naughty I have autism t-shirts very helpful in situations where my son is likely to be stressed (which will obviously affect his behaviour) and where also there will be people who don't know him/us. So my mother-in-law's ordination saw everyone dressed smartly and my son in one of those t-shirts and people treated him differently - gave him leeway - where probably they otherwise would not and that then resulted in him being less stressed and he behaved way better than anyone expected. So maybe those t-shirts would be a good idea in play areas if you think it might have a similar positive impact.

However, nearly all toddlers go through a biting, shoving phase so maybe it isn't necessary?

We find social stories help with our son, maybe you could use one of those to explain autism to your eldest?

Generally I don't like the thinking behind the 'I have autism' etc ranges of clothing. However when my son was young I must confess to succumbing to a baseball cap with, So what? on the front that either of us could wear.

The 'Autism is... ' cards can be very useful and they help to spread the message. You can get them here:

 http://www.autism.org.uk/en-gb/products/core-nas-publications/autism-cards.aspx

Regarding the 'What is autism' question the NAS has a lot of publication and you might want to look at some of the categories on this page:

http://www.autism.org.uk/shop/books-and-resources-from-the-nas.aspx

If I was in your situation the first book that I would buy her would be 'All cats have aspergers syndrome', and you can find that here:

http://www.autism.org.uk/shop/amazon-store.aspx

Regarding the 'Who is God' question I would only suggest you start your answer with, 'She...