telling your child their diagnosis

I can't believe it was over a year since i posted on this. we did go ahead and tell my son his diagnosis - by showing him an arthur episode about asd and then talked to him about differences. i think he was hugely relieved to know that he was not totally alone and that other people had similar difficulties to him. it has made it easier for all of us being able to talk about it - not as an excuse for his behaviour but to help access support and explain to others what can help him. it also made it easier to talk to his sibilings about how everyone has things they find easy and things they find difficult in life and he has particular ones that have got a name. i think it was good that we didn't try and have a discussion with him when he was 7 and diagnosed but by 8 and a half he could kind of understand what we were telling him.  Hard decision but think it worked okay for us! Good luck...

I found this topic really useful as I've been toying with the idea of telling my son who's 10 about his diagnosis. Part of me thinks he may be relieved knowing why he's different, which he already acknowledges but part of me is concerned he'll worry that he'll always be different. As he's prone to low moods I'm having trouble making my mind up on the best way forward. I think I'm swaying towards telling him though as like others have discussed I'm scared someone will accidently blurt it out one day. It's probably better if I can tell him in a positive and constructive way than him just finding out by accident and feeling like I've lied to him.

Have you considered letting your child join a support group for asc children.  He may pick up on similarities with the other kids and when the penny drops he may be better able to handle it as he knows he is not alone.  

Kids with asc can be very forthright with their likes and dislikes and also very accepting and understanding of others with asc, more so then many professionals lead us, to believe.  

Hi, my son age 15, was officially diagnosed last week with Aspergers. He was first referred via his infant school at age six, this is a really long story but mainly because his main difficulties were apparent at school and we accepted him as he was at home, we were told he is just a bit stubborn. The diagnosis process was different then and we were told later that the interview was with a nurse at Camhs not a psychologist.

I would love that to be the end of the story and that my son's difficulties went away with age, but it only got worse until eighteen months ago he shut down and was eventually diagnosed with depression and referred again for diagnosis.

We will talk to him and he is in a much better frame of mind than he was a year ago, but I'm anxious that how we handle this will affect how he views himself in the future. We have talked to him last year about the possibility and given him a book about it, but he didn't want to know.

I would appreciate any advice on how to approach this?

While we were waiting for diagnosis I took the plunge and explained Aspergers to my son. I told him what it was and described some of the symptoms. He immediately said "like me" and appeared to recognise himself. He then wanted to read 'the strange incident of the dog in the night time'. he was just us when we got the diagnosis and appeared unfazed by it. He is a bit older that your son though so I don't know if that makes a difference. All I can say is that I'm glad he knows and that there are no secrets.

My son who is 7 has a diagnosis of ASD but we have not told him. He knows he is special and he calls himself such but doesn't know there is anything wrong.

Hi Hotel California,

No you are not wrong, that was me.

We have now commenced with appointments for official diagnosis with the ADOS test but the person who is carrying out the test has known my son for two years and we have been made aware of ASD for the last two years now and and  are all very sure of the diagnosis, it is just not written down on official paper!!

I did not want by son to go through two or three assessement tests without knowing what they were for Autism Spectrum/ Aspergers.  he is a very clever child and i do not want to lie or cover up the truth, i have also heard all too commonly the child may be told or diagnosis discussed with the child by a unthinking DR without the parents ever having discussed it with them, i did not want to risk that happening so we have covered what "i think" my son has and that is how it was put and left, he was not stressed by it , i am sooooo relieved to say and we are covered if some "twit" mentions it by mistake infront of my son. 

I am not stupid or uncaring , i have been thinking this over for a long time and by son does not show some traits he has most if not all, with his early years history the diagnosis is certain, it just has to be made official, so it can state it on his Drs notes for the future if needed.

I know what you are worried about people using the label too easily as an answer for behaviour problems, but we have read and discussed this with experts for two years before we have got to this stage so not just a spur of the moment thing.

Puffin

Hi puffin

Correct me if I am wrong, but didn't you post on here a few weeks ago about your reluctance to get your son diagnosed because your husband was not supporting a formal diagnosis.  Does your son now have his diagnosis, or have you decided that telling him he has aspergers without a clinical diagnosis your answer to a difficult situation.

I certainly hope you do have a proper diagnosis because if he later discovers he doesn't have it, the psychological damage could be profound.

Others may disagree, but I strongly believe that you should only tell your child when you know for certain.

Hope I'm wrong and you haven't jumped the gun as it were.

Discussed Aspergers with my son yesterday for the first time ever.  I like you was worried how to tell them although i knew he knew he was different .

For weeks now we have been discussing how being different can be good and talking about different positive examples of being different.  I also kept on at how his brain was different to mine , better at computers, puzzles eg it was just better at those things, his passion for wildlife etc.

When i finally discussed Aspergers yesterday i said " have you ever heard the word Aspergers" which he had not, i then mentioned all the positive traits great with computers, love of animals, great long term memory, attention to detail, he was jumping up and down like he won the lottery saying yes thats me!  We discussed things he may find difficult such as eye contact, busy loud enviroments, concentration, "yes that is me", i stressed those skills can be improved, and he said is it a problem? i asked what would you rather be able to look people in the eyes, or be brilliant at computer games of course he picked games!  he asked "is it an illness" which did tug at my heart" but i replied no, and only used Aspergers as i do not like the ASD "disorder" label as it is negative.

Still that was the start i left it there the word is out there so if he heres it he understands and i intend to keep it positive, it did help that his Dad is a undiagnosed Aspie too, so he is not alone!

Good luck it is tough but keep it positive and they will be ok with it as long as you are.

Puffin

thanks so much for all your replies. Really helpful.

It is just so hard to know what is the right thing but agree that we need to focus on all the things he has that are positive and increasing his self esteem while at the same time perhaps giving him the diagnosis so he doesn't feel that he is just failing compared to his peers.  

If you look on the forum there were other recent posts on this exact subject.  My advice is to tell, and do so in a positive way.

Hi Simon, my son is also 8 and high functioning ASD, but was diagnosed over a month ago, and I've still not told him. I want to be open and honest, but don't want him to feel different, and labelled. I'm not sure he has the capacity to take it all in yet. He's a curious child and I can see him googling autism, which again, I don't know if that's a good or bad thing. I think I should tell him soon, especially as he does have difficulties at school, with concentration and the social side of things. Maybe if he knew, he could deal with it better? I just don't know. He's at a funny age, he's becoming more aware of things, yet he's still quite innocent. 

Hi Simon,

   I have two boys with ASD and co-occuring specific learning difficulties and both took thier diagnosis in different ways. One I was able to tell myself in a measured and controlled fashion and he embraced it and looked for ways to help himself manage his difficulties, the other found out by a thoughtless consultant who should have been more sensitive. He's remained in denial until quite recently. Both however were a little older than your child when diagnosed. They are now teenagers.

As a parent my thought was that of openess all round, but each child is different. You know your son best and are likely to know how best he may respond and how to tell him. Preparation for the news is key here I think. I thought my son (in denial) would embrace his diagnosis in a positive way, but at the time he just wanted to be like everyone else and hide his disability. I'm sure their must be advice on telling children about their condition, sadly i wasn't given any and our consultant just blurted it out to my son with no warning. We weren't given a chance to explain things to him and he didn't understand the diagnosis and was convinced he had something terminal, which wasn't helpful. I'm sure this contributed greatly, to how badly he dealt with his diagnosis.

Masking his difficulties has been very tiring for him ever since and he still suffers with great anxiety. I wish in a way he had been diagnosed earlier so as to give him a chance to process it all more slowly and also that we had been afforded the chance to break it to him ourselves, but we can't turn back time.

At a recent doctors appointment we were in the waiting room and he spotted a child with ASD sitting on his mums lap and sensory seeking. He immediately recognised himself at that age and brought it to my attention. He will never be comfortable with his condition, but he is coming to terms with it and now he's more accepting and clearly recognises his traites in others. I often think that until we accept, we don't move forward, but perhaps thats just my musing.

I'm sure your son has some very unique gifts being on the spectrum and i always find it helpful to focus on the positives when speaking with my boys. I wish you luck in your decision.

Regards

Coogybear