When to tell your child

[sandyn]

Hi, my son was dx with ADHD/Dyspraxia Sept 2006, and then about 6 months later with HFA. We have sat down and explained about the ADHD (included his dyspraxia aswell), and he was obviously upset but has dealt with it well. He is now on meds and his behaviour/concentration/attention has imroved 100%.

I am in a dilemma and desperately need some advice re his HFA. I don't really feel, at 7, he is ready to have this put on him as well, but also I don't want to ignore the issue. What I don't want to do is leave it for years and him finding out.

 

Can anyone give me any advice as what to do?

 

Thanks in advance

 

SandraXX

[krystaltps]

I know, it's hard to get the timing right and to know what to say. C was 7 when we told him about his AS. I waited until after a meltdown, when he was in the apologetic, self-hatred stage ("I'm such a bad boy") and then told him - I told him he wasn't bad, that he had something called Aspergers that caused him to act certain ways. We had read one of the Kathy Hoopman books together, during the dx process, so he was able to relate his experiences to that of the "hero" in the book (who is also dx with AS). Might be worth a try, not sure if it'll be as useful for you, as your boy's dx is different (although from what I've read the only difference between AS and HFA is initial speech delay - therefore many of the behaviours will be similar). C immediately related to the boy in the book while we were reading it - "I do that too!", he even asked me if he might have AS. So when I eventually told him, it didn't come as a massive shock.

I also tried to emphasise some of the positive aspects of AS for C - the fact that he has the ability to really focus on the things he's interested in. I also listed some famous people with AS, so that he knew he wasn't alone.

I wanted C to know, because he hated himself and had no self esteem, he couldn't understand why he kept doing things that upset other people and wasn't able to control it. My belief is that, so long as you think your child can have a basic understanding of what you are telling them, then tell them as early as possible.

C took it very well, but every child will react differently. Hopefully you'll get a few suggestions that will help you decide how to go about it, if you choose to tell him just now.

Edited May 4, 2007 by krystaltps

[pearl]

J was about 10 & off sick from school. We were talking about all the teachers & TA's he'd had in his life, & I said, ever wondered why you have a TA? & it just flowed from there. He still remembers the conversation. (In a good way)

 

Until it was out in the open I felt I had to be v careful what I said about him to other parents as I wouldnt have wanted him to find out from anyone else.

[KateBall]

We were talking to my ds only yesterday about some memories he had of a downs syndrome child at opportunity playgroup (for special needs children of all sorts) that he used to go to. He thought for a while and then said "so what's wrong with me then". I took a really deep breath. It was the first time he had ever acknowledged he knew he was different. I told him that there was nothing wrong (I was quite taken back that his immediate thought was that being there meant there was something "wrong" with him). I just explained that he needed to go there because he didn't talk and they knew sign language etc. I don't feel its dealt with the issue about his "special needs" and I expect I'll cross that again at some time. I want him to know that he is special not that there is anything wrong. Not sure I'll be able to convince him when he's often treated by so called "friends" and (especially) their parents as a leper.

[Shnoing]

If there's a 'role model' in the family (as AS is hereditary there should be one) you could try to bring his attention to it already at age 7. He can already feel that he's different somehow although he will be too young to find words for it. In any case you shouldn't deny that there is 'something', otherwise he'll feel lied to when he's older.

Edited May 6, 2007 by Shnoing

[KarenT]

I told J before diagnosis, during the assessment period - I reckon he was about six and a half at the time, and it was the best decision I could have made. It made it so much easier for me to explain certain things to him and for him to understand, it helped us to face his difficulties head-on and begin to work on them. I have always believed that 90% of problem solving is recognising there's a problem to start with, and once we told J that (for example) his anger and inattention were related to his condition, he could accept them as something we could work on together. Our children are often very logical and without a rational explanation for their difficulties they can be very scared - telling J removed that fear and he's been able to move on. He's doing pretty well at the moment

 

BUT... I also recognise that telling might not be the right thing for EVERY child on the spectrum.

 

I made my decision to tell after reading Martian In The Playground and found that the majority of adults quoted said they wished they'd been told when they were young children, so that they could have taken away that feeling of 'what's wrong with me?'. I didn't want J to feel that way, so I felt that honesty was the best policy in our case.

 

Karen

x

[sandyn]

Hi, and thanks for all your advice. I have ordered a Kathy Hoopman and will read it first then with my son and take it from there. I don't know of anyone in our family who has a dx of AS although I think there are of quite a few that should be.

 

Many thanks again

 

Sandra

x

[jlp]

I told my son tonight (he's 7 and 1/2). I was reading a book and he wanted to know what I was reading. I told him it was about a little boy with Asperger Syndrome and he immediately asked if he had Asperger Syndrome so I said yes.

 

I've mentioned little things prior to this such as him having ears that don't like too much noise.

 

Tonight I kept the conversation brief - read him a few pages of the book and pointed out a picture of the boy with his hands over his ears next to the hand dryer (he remembers being scared of them). I'll let it have a while to sink in.

 

I don't think he really understands himself enough to understand the diagnosis - I was reading some things out such as 'sometimes it can be hard to tell the difference between friendly teasing and bullying teasing' ('I don't'), 'sometimes it can be hard to tell how people feel by the way they stand or talk or the expression on their face' ('I don't) etc!

 

He does obviously have the difficulties associated with Aspergers but isn't yet at the stage where he can see that it's not just everyone else being wrong!

[Bard]

One of B's passions is cats. He knows the name and characteristics of every cat in our neighbourhood, and new arrivals make a bee-line for him.

The obvious choice for us was to read 'All cats have Asperger's Syndrome' which he enjoyed and understood.

He relates his AS to his brain being wired differently, and can explain some of the positives and negatives that relate to him. He doesn't see it as a disability, more a difference that requires understanding and thought.

He was relieved to find out at 9 that he wasn't just evil incarnate, there was a reason for the Krakatoas that happened at school.

[tmf]

I have only just discovered this thread but it has been a question that has been on my mind for sometime now.

 

Ds is 8 and although his vocabulary is very good, his understanding is extremely poor (he was recently accessed) and i thought this would be a huge barrier in trying to discuss with him.

 

I have made a note of some of the books listed, along with the advice on this thread i can now finally make my journey in letting him know.

[Stella63]

Hi

 

It's really interesting hearing how and when parents tell their children. It was easy for me because when OJ had his breakdown in Yr5 he needed to understand why things were so different for him and once he could put a name to it he was on the internet finding out what he needed.

 

He read The Curious Incident of a dog at night time last summer and loved it and has also read all the Kathy Hoopman books. He hones in on other AS children and is sometimes confused when they don't know that they have AS.

 

This leads me on to an area that I am keen to explore in my postgrad assignment. I work at OJ's school and there are several AS children who wander around in a complete state of bewilderment, they haven't been told they are AS and as a result, are struggling every day trying to make sense of things. When I spoke to my SENCO about this she said that if the parents have chosen not to tell them, we are not allowed to intervene even though we could help them so much more.

 

I would love to set up some sessions with As kids to help teach them about themselves, teach them how the NT mind operates and give them a sense of belonging to a group. I learned on my course that AS people can share a theory of mind with each other, but not with NT's and it makes sense to capitilise on this for their own benefit. I think this is why OJ is able to pick out the other AS kids without actually being told they are.

 

The other interesting thing is that so often post diagnosis, the job of telling the child is left to the parents who sometimes may still be struggling with the sheer enormity of the diagnosis themselves or don't feel qualified to tell them. WHERE are the professionals and why aren't they involved in helping deal with this!!

 

 

 

Stella xx

[Cat]

Hi Stella

 

You and I sure do sing from the same hymn sheet. My DS2 was 13 when he was finally diagnosed when he was 13 following a complete breakdown aged 11. The diagnosis answered many of the questions that he needed answering. My DS3 was actually diagnosed 6 weeks before his brother he was only 3 at the time. After DS2 was diagnosed we spent a greal deal of time talking about his AS and what it meant to him. This has meant that DS 3 has grown up always knowing about his autism and it has made a HUGE difference to him. At 10 he can almost always manage his own emotions - well his anger - because he knows what is causing it and can spot his own triggers. DS3 would actually prosecute parents who do not tell their children about their diagnosis (extreeme I know but then he does have autism ) He believes that all children have the right to know about themselves - and yes of course it does depend greatly upon their level of understanding - but DS3 could not believe that some of the children attending an ASD Drama Class had not been told about their ASD. Having said that it all depends on age and understanding DS3 could not possibly have understood his diagnosis when he was 3 but his knowledge and understanding has grown with him. Tony Attwood also believes that self awareness of ASD is very important.

 

I share your desire to set up self awareness sessions to help children understand themselves. How can you possibily hope to understand other people and the world around you when you have know awareness or understanding of yourself.

 

Cat

Edited November 17, 2007 by Cat

[kellyanne]

Hi,

 

My DS also has ADHD and AS/HFA (as it says on his report from his dx) When he was dx with ADHD 2.5yrs a month before his 6th birthday, we told him straight away as he asked about his appointments. We told him he had something called ADHD which sometimes made him run around and be silly, and that he was going to try some tablets to see if they help calm him down. He seemed ok with this.

 

When he was dx with AS/HFA only last month. We said that we were going to have an assessment to see if he has the same thing as his friend in his class has and that we were going to find out how we can help him understand who he is.

The reason we said about the other boy in his class was because he knows that the other little boy has AS. So when we did get the dx and said yes J you do have AS he replied "does that mean if got the same as so and so" so we said yes you do. Because he knew he had the same as the other lad he was quite happy saying " I've got the same as *****, I've got the same as *****" We felt better telling him that so he knew he wasn't alone as he sort of understood a little about the other lad. Every so often we get the question, do i have AS? and we keep telling him yes.

 

We did go through some things on the internet and I have Tony Attwood A complete guide to Aspergers Syndrome and as J likes to read he's had a little look through.

 

It helped us knowing that J had a little knowledge about AS because of his friend.

[Karen A]

Hi.I was reading through this post and was reminded of a conversation Ben had with a child in another year at school.The child was chatting to Ben and asked if he has AS.The boy has friends with AS and obviously knew enough to spot that Ben might have it.We have been very honest with Ben and he was very able to talk about AS.I am very glad we were open as I would not have wanted somone else to tell him first.Karen.