Jump to content
llisa32

How to tell J about the diagnosis..

Recommended Posts

Hi,

 

A couple of times this past week J has said things about actions of his and related them to 'Dyslexia'....

 

We now know he's not Dyslexic, but he is High Functioning Autistic - I've checked with J's dad and he's happy for me to explain to J about the diagnosis and that he does not have dyslexia etc, so I'll go for it whenever the right 'moment' appears in the near future.

 

That right moment could be tomorrow - it might be Friday or next week, but I believe he's ready to know and that it will help him understand why he sometimes feel's 'different' to his peers (J's words)

 

J's 8.5 yrs old...how have you guys approached it?

 

I have some ideas on what to say to him as I know whats been bothering him re difficulties, but be very intrested to know how others have approached this issue, and how did your child accept the 'news'.

 

I don't think J will be upset about it, but I'm going to need to be careful about how I explain he's no longer Dyslexic, as I don't want him to lose faith in teachers etc (as in he'll think they got it wrong before...which they did! - I know :)...but...)

 

Any thoughts welcomes pls >:D<<'>

Share this post


Link to post
Share on other sites

JP was about 10 when I told him, llisa, I'd thought it through but hadnt actually planned it for that moment.

He was off sick, & we were just lazing around on the sofa & chatting, & he starting counting all the teachers he'd ever had, then his TA's.

 

So I took a deep breath & said, ever wondered why you have a TA? And went from there. He knew an autistic boy so I said, you are a bit like him but imagine you are at the beach, the peeps without autism are on the sand, X is way out at sea, & you are paddling in the shallows. I have no idea where that came from but it made perfect sense to him & he still mentions it to this day.

 

Of course it wasnt the only time we talked about it but it was a good start.

Share this post


Link to post
Share on other sites

hi lisa

i mentioned it gradually to hayley but it was more explicit when she was being assessed so i felt i had to prepare her.

She is very comfortable with knowing and likes understanding herself a bit better.

nic

Share this post


Link to post
Share on other sites

Hi

 

My son has never had a formal diagnosis of AS and I only became aware over a period of time after discussing with a work colleague about some of my concerns regarding my son.

 

My son was formally diagnosed as dysphasic but this didn't really deal with his issues but AS does. I have never gone to him with AS since I feel he doesn't need anymore labels but we do try to help him (he's now 24) by providing support.

 

He always had difficulty with being "different" and his greatest wish was to be "normal" so much so we parked his statement during his teens much to the annoyance of his school.

 

The AS label has helped me greatly as I can now understand him and make allowances which helps. I come on this forum to learn from others about how it affects people to hopefully help me to help him and the recent posting on eye contact has really helped with that goal.

 

For me at this stage of his life I'm not sure that it would help him but I think his greatest issue is relationships which I fear are perhaps one of the most complex issues to explain as you are being subjective and react on your feelings.

 

Anyway rambled on for too long.

 

Take care.

Share this post


Link to post
Share on other sites

my son has always known he was different, he is bright enough to realise that all by his self. From the age of 5 he was asking why I am I different from other children, why do I get treated differently. So the questions of knowing when he get a diagnoses is immaterial as all I have to is explain the condition.

Share this post


Link to post
Share on other sites

Lisa, we bought Aspergers, What Does It Mean To Me. Found it invaluable, and you can work through it with your child. We told our eldest DD about her dx some time ago (she's 10 now), so I think she must of been 9. She took it well and all she was worried about was if it was infectious, bless her, or if she needed injections. There have been times where it's been a godsend that she's been aware of her dx.

 

Our youngest DD is 7, and would have no absolutely no concept of what ASD is, so don't know at what point we will tell her.

 

Good luck!

Share this post


Link to post
Share on other sites

I'm sorry I have no advice to give llisa I'm still trying to work out how to approach it this end too! M is 9.5 and to be honest he really wouldn't grasp anything I said about it just yet.I did however buy a book in readiness called 'I am Special' which is actually really good.

http://www.amazon.co.uk/Am-Special-Introdu...1323&sr=8-1

 

It has lots of worksheets in it so you can do things together and learn things like everyone is different on the inside,everyone is different on the outside and its ok to be different :thumbs::thumbs:

Very easy to understand and you can pick and choose which parts to use I got mine from Amazon and I think you can look inside it on there??

I'd love to know how you get on

Dee XX

Edited by Deedee

Share this post


Link to post
Share on other sites

That looks like an interesting book Deedee. My only concern would be how autism is presented from the parts you are able to read online. The part that irked me was where it says basically that autistic people aren't going to have a normal life - drive a 'fast' car, have a house, family etc. :(

 

Lisa - sorry, I don't know, but what I do know is that if I had been dx'ed as a child I would have wanted to know. I can remember from very young, probably 5/6 years old, knowing that I was different in someway and not having a clue why and so not being able to be at peace with myself but constantly blaming myself for being a bad child.

 

I wonder if you could use the dyslexia thing to your advantage - something like, remember when that Doctor woman came to see you here and in school? Well she agrees with your teachers that you have problems that dyslexic children have so they were right to call it dyslexia and to give you dyslexia tuition and that's really helped you, but the doctor woman thinks that your dyslexia is part of something else called autism which gives you the same dyslexia issues but which also causes you some other difficulties in school. You know when ...., well the doctor woman has said that you do this because you have something called autism and .... (and then as and when provide info on HFA to suit his readiness) - maybe :unsure:

Share this post


Link to post
Share on other sites

Thanks all for your replies >:D<<'>

 

I think J is ready to know, he's definately very 'aware' of the differences between him and some of his peers and to a large degree I think this is why he has settled much better into the other form class.

 

Bagpuss - I'll take a look at that book - thanks >:D<<'>

 

Thanks dee for the book name - I'll take a look at that one too >:D<<'>

 

Mumble - yep, your idea is kind of how I'm thinking >:D<<'> I'll take things re the dyslexia as without a doubt the one to one help with grasping phonics etc has most definately aided him with reading and he now reads above his age level as oppsed to a couple of years below.

 

Guess I'll just wait the the 'right moment' now :)

Share this post


Link to post
Share on other sites

:thumbs: Hi Mumble I was a bit worried about that aspect of things as it does cover literally the whole spectrum from very HFA and AS right the way through...we too have always tried to give M a positive view of his 'little ways' as we call them! I don't want him to ever think his Autism will be a burden or something to be ashamed of... I like to think the sky's the limit and as long as he has a happy life who knows what he will achieve.Our little man surprises us every single day :notworthy:

 

I think thats why I enjoy yours and others posts regarding how things may be when he gets older,it gives us hope and something to strive for.

 

In some ways the book is way too advanced for his level of thinking *at present*, but in others its very good and I think the beauty of it is you don't just hand them the book and let them read it,its more um...well the first part explains how to get the best from it,how to use it etc..The worksheets are further on and theres also quite a lot of 'stuff' which I found interesting on the subject of the spectrum too.I guess its up to the parent/professional how they use it best??

 

It does suggest using it in school or in a setting such as CAMHS etc..but I think we'd probably know which part will suit him the best as and when the time comes.You also don't have to do it all in one go.I plan to use it as I say when he reaches a stage where it will be understood well enough by him so as not to give him any more worries.

Dee XX

Share this post


Link to post
Share on other sites

I started telling J during the assessment process. He's not daft, he knew it wasn't 'routine checks' like I tried to convince him, and anyway even then I felt he'd be better off knowing because you can deal with something you understand whereas you can't if you're kept in the dark.

 

We started by telling him that the reason he was seeing so many doctors at the hospital was because of how angry he got, that we knew he wasn't happy being cross all the time and we wanted to help him learn how to control his anger. We told him that the doctors would be able to help him with that (ha!). As time went on and we didn't get a dx at the first assessment, we were more open with him about the second assessment and bought books (Can I Tell You About Asperger Syndrome?) was a useful one). We've never backed down from his questions about AS and have encouraged him to learn more about it so that he can understand why he behaves in certain ways. Essentially, we've made it everyday conversation material, it's not just talked about at certain times but whenever it crops up. I'm also pretty straight with him when I find him misbehaving 'normally', and will tell him "That's not Asperger's, J, that's just you being naughty" and he usually smiles because he's been caught out.

 

Facing it head-on with J was the best thing we could have done for him. He's come on in leaps and bounds in tackling his difficulties because with his understanding of the condition comes a desire to want to make things better for himself. It's much easier to engage him in working on self-help strategies if he understands why.

 

Karen

x

Share this post


Link to post
Share on other sites

The doctors told my son when he was diagnosed formally with Aspergers at 8. We werent happy as they just told us and him all together- it could have been better handled. But that night he read Luke Jackson's book and really related to it. We had also bought a book called I am Adam and the Blue Bottle stories. We have always tried to be positive about it. Our daughter actually guessed herself at age 6 that she was "different". She had realised that something was going on as she had had all the testing. She read the book I am Adam and could spot where her and her brother were similar. She took us all by surprise! Then we sat down and chatted about it. Good luck.

Share this post


Link to post
Share on other sites

Hi Lisa, DS was just turned 9 when we told him - in hindsight I'd have told him at 8 when he was diagnosed - it would have made things easier for him I think. I like Mumble's idea about using the dyslexia - it gives you a way in. We gave DS Jude Welton's 'Can I tell you about Asperger Syndrome?' - of course, first time he just wrote a big 'NO' after the title and didn't even open it, but once left on his own, he read it and ticked the pages he thought applied to him. A year later I found 'how to be yourself in a world that's different' and he really liked that.

 

He also read the Blue Bottle mysteries (pre-telling him) but while he enjoyed them, didn't seem to realise how he matched the characters.

 

Good luck. Prepare for very strong emotions from him

Share this post


Link to post
Share on other sites

Hi Lisa

among all the others very good books that have been suggested already, I recommend to use also "Do you understand me?" by Sofie Koborg Brosen (JKP).

 

My son was your son's age when we told him and explained his diagnosis, but he is an Aspie so we used the excellent Kenneth Hall book Asperger Syndrome, the universe and everything.

 

The only things I can suggest are: focus on the strengths, stress that it is not an illness, bring the examples of all these kids in the spectrum who wrote books and somehow "became famous" as positive examples.

 

Martina

Share this post


Link to post
Share on other sites

Thanks all >:D<<'>

 

Well I did 'Introducing J to Autism - part one' last night :)

 

Firstly I asked him if he still felt different to his peers, he said he did, so I said 'well you are a weeny bit different - but in a good way'

 

I started with the Dyslexia and mentioned his memory etc and how actually we now know that you don't have Dyslexia, you have something called 'Autism' He gasped when I said you don't have dyslexia! but in a dramatic kinda way that he does so cutely :wub:

 

I mentioned then a few of the things hed been struggling with at school at explained why that was, and how we now have a better idea of how to help him at school, and he agreed that since a few changes have been made school is much better.

 

Then I went on to list some of the things he finds really easy - like building power ranger megazords with only japenese instructions!! - buiding anything....video games, great memory for visual stuff etc etc.

 

he said 'Okay - can I have my dinner now??! :)

 

He seemed last night to be more shocked that he didn't have Dyslexia than the mention of anything new...but equally seemed fine with what I told him. I'm sure he'll mull it over and come back with questions when he's ready, and I'll bring in more info as and when 'moments' crop up

 

but I'm happy now that if he hears the word 'autism' at school, he's heard it from me first and he knows it's not a bad thing nor something negative for him

Share this post


Link to post
Share on other sites

Well done lisa, great start! :thumbs: It's really scary, isn't it. I remember agonizing for weeks about how and what to say and being so fearful that the knowledge would somehow 'break' him. Well, I finally got round to talking to him about it and his response was, 'oh' and then he carried on drawing! :wacko: I was so relieved and he just took it so matter-of-factly, it was a bit of an anticlimax, in fact, I wondered what I'd been fretting about all that time. :lol:>:D<<'>

 

~ Mel ~

Share this post


Link to post
Share on other sites

Well, sometimes it can be a relief too. The reason why we told our son is because he had started coming back from school calling himself a "freak". Moreover, in that old school of his they were making any possible effort to make him feel different... :wallbash:

 

Knowing your own diagnosis can empower you as well, with time. My son is now really into animation (stop motion, etc), it's getting quite good at it and wants to make a career out of it. The other day we were watching a TV interview with Tim Burton (he saw a few of his films -the ones suitable for him :rolleyes: - which he loved) and I told him that he was Asperger too. My son's reaction was "wow, so I can make films too, great". It's good that some famous people are coming out with it, it certainly gives us and our children good role models ;-)

Share this post


Link to post
Share on other sites
That looks like an interesting book Deedee. My only concern would be how autism is presented from the parts you are able to read online. The part that irked me was where it says basically that autistic people aren't going to have a normal life - drive a 'fast' car, have a house, family etc. :(

 

I was shocked reading some of this book on Amazon too as my son was diagnosed with Aspergers around 6 weeks ago aged 5 and I was thinking of telling him soon. It said the best time to tell a child is when they are saying they want a family, house, fast car etc.....

 

Im not sure I agree that telling a child that they have Autism when they have (in my opinion) perfectly realistic expectations from life is the best thing. Ok so my son has poor coordination so maybe driving a fast car may be tricky but at the end of the day everyone dreams. If a person with autism has the capacity to dream of having a family, house and car then they surely also have the capacity to achieve their dream. Im sorry but im not going to be the one to shatter my sons dream, Im a dreamer myself and if he only dreams of a flat and a skoda ill be the one encouraging him to dream of a mansion and a porsche! Noone gets anywhere in life without dreams and ambitions. Call me thick but how can they suggest that Autism is a reason to stop dreaming. I fail to see how this isnt achievable for a person with Autism or in fact most disabilities. My husband has cerebral palsy and is a wheelchair user and we have our first child together on the way, the car ordered - albeit mobility! and a house.

 

End of rant!!

Share this post


Link to post
Share on other sites
I was shocked reading some of this book on Amazon too as my son was diagnosed with Aspergers around 6 weeks ago aged 5 and I was thinking of telling him soon. It said the best time to tell a child is when they are saying they want a family, house, fast car etc.....

 

Im not sure I agree that telling a child that they have Autism when they have (in my opinion) perfectly realistic expectations from life is the best thing. Ok so my son has poor coordination so maybe driving a fast car may be tricky but at the end of the day everyone dreams. If a person with autism has the capacity to dream of having a family, house and car then they surely also have the capacity to achieve their dream. Im sorry but im not going to be the one to shatter my sons dream, Im a dreamer myself and if he only dreams of a flat and a skoda ill be the one encouraging him to dream of a mansion and a porsche! Noone gets anywhere in life without dreams and ambitions. Call me thick but how can they suggest that Autism is a reason to stop dreaming. I fail to see how this isnt achievable for a person with Autism or in fact most disabilities. My husband has cerebral palsy and is a wheelchair user and we have our first child together on the way, the car ordered - albeit mobility! and a house.

 

End of rant!!

I completely agree - it was that part that I picked up on too and was shocked by.

 

My brother (ASD) loves buses, has a huge collection and keeps saying (sort of) that he's going to be a bus driver. No it's not going to happen, but it's a dream he's happy with so why shatter it by saying you're autistic, you can't?

 

Incidentally, I'm going to have a little white flint cottage on a Scottish island where I'll work from home, writing and looking out over mountains and sea, a sheep, a goat (for milk), several rabbits and I'm going to have my own canoe :)

Share this post


Link to post
Share on other sites
Incidentally, I'm going to have a little white flint cottage on a Scottish island where I'll work from home, writing and looking out over mountains and sea, a sheep, a goat (for milk), several rabbits and I'm going to have my own canoe :)

Sounds bliss!

Share this post


Link to post
Share on other sites
Incidentally, I'm going to have a little white flint cottage on a Scottish island where I'll work from home, writing and looking out over mountains and sea, a sheep, a goat (for milk), several rabbits and I'm going to have my own canoe :)

 

Sounds bliss!

 

Ive just got a degree last year and I think my computing department was full of Autistic people and most of them were among the most successful students/lecturers because of the ability to focus on a subject. I didnt read past page 18 of that book online because it just didnt ring true to what ive seen of the Autistic people that Ive met.

 

I will be following this thread though because it is very relevant to me as im wondering how to tell my son as I dont want him to think im trying to say there is something "wrong" with him. Im not sure why im worried though as he is 100% certain he is perfect im not sure he would ever think otherwise!

Share this post


Link to post
Share on other sites

Hi All,

 

I've just read a book I would cheerfully hand into school and other relatives - it's written by a dad whose son has aspergers and the dad is also a teacher.

 

No long words, no sterotypical comments/beliefs, and I found it to be a 'positive' interpretation - it's called:

 

Learning to live with High functioning Autism - a parents guide for professionals

Share this post


Link to post
Share on other sites
Then I went on to list some of the things he finds really easy - like building power ranger megazords with only japenese instructions!! - buiding anything....video games, great memory for visual stuff etc etc.

 

Its great that your son recognises his strengths. My son is also great with instructions and his ability to spell words backwards blows my mind! Its always better to be more focused on your strengths than weaknesses so it sounds like your first chat went well.

My boy was diagnosed around 6 weeks ago and ive still not found a way to tell him.

Share this post


Link to post
Share on other sites
just read a book I would cheerfully hand into school and other relatives

I've just looked at the pages online - looks good, though I couldn't work out why it changed countries half way through?? :unsure:

 

I found myself nodding along and even the contents looks interesting - I think the part about AS being autism would be very useful for people to read, and the confusion that the world causes with the need for people to respond to this.

 

I would love to tell DW and halls manager to get a proper book and read it rather than the limiting drivel of a book she keeps referring to :(

 

guide for professionals

Aha - maybe that's why she hasn't read it! :devil:

Share this post


Link to post
Share on other sites
Learning to live with High functioning Autism - a parents guide for professionals

 

Thanks for this, I had a read of a few pages on Amazon too- it looks good and very readable so I placed an order for it.

Share this post


Link to post
Share on other sites

Hi as J has already had diagnosis of ADHD and Dyslexia he understands these already then when we looked throw ASD we looked throw books of these and one that I found really easy to read throw with J is a booked called

 

Can I tell you about Aspergers Syndrome though its ASD that J has It does have many of the same issues inside and J related to many of them page 24 it is Adam explaining to a friend this sentence

 

I can get very upset when unexpected things happen or when there is a change of plan that I havent been warned about.

 

J straight way identified with this, and we went throw the book and went throw some of the stratagies, its a great book to let his friends read too and they understand a little more now.

 

So dont just stick to books on High functioning Autism, look throw books on AS, and ASD and HFA as all of them will have aspects that your son will be able to relate to for J I went throw the difficulties he has with his social skills and his interaction and his sensory difficulties and he understands these to be part of his ASDs.

 

JsMum

Share this post


Link to post
Share on other sites
I was shocked reading some of this book on Amazon too as my son was diagnosed with Aspergers around 6 weeks ago aged 5 and I was thinking of telling him soon. It said the best time to tell a child is when they are saying they want a family, house, fast car etc.....

 

Im not sure I agree that telling a child that they have Autism when they have (in my opinion) perfectly realistic expectations from life is the best thing. Ok so my son has poor coordination so maybe driving a fast car may be tricky but at the end of the day everyone dreams. If a person with autism has the capacity to dream of having a family, house and car then they surely also have the capacity to achieve their dream. Im sorry but im not going to be the one to shatter my sons dream, Im a dreamer myself and if he only dreams of a flat and a skoda ill be the one encouraging him to dream of a mansion and a porsche! Noone gets anywhere in life without dreams and ambitions. Call me thick but how can they suggest that Autism is a reason to stop dreaming. I fail to see how this isnt achievable for a person with Autism or in fact most disabilities. My husband has cerebral palsy and is a wheelchair user and we have our first child together on the way, the car ordered - albeit mobility! and a house.

 

End of rant!!

 

I'm sorry if my suggestion has upset everyone so much :unsure: It was only intended to help

:oops:

Share this post


Link to post
Share on other sites
I'm sorry if my suggestion has upset everyone so much :unsure: It was only intended to help

:oops:

It didn't, it was just that sentence in the book. :)

Share this post


Link to post
Share on other sites

Deedee - You didn't cause any offense at all - don't worry >:D<<'>

 

Mumble....you might see a diff country ref in the book half way thru a scan on google because he does give some refs/examples from all over the globe - both adult and parent .

 

I've read it cover to cover today and I'm definately 'comfy' with this one for giving out to school/relatives etc

 

I'll take a peek at all the other mentioned and take material from all of them probably! :)

 

Mumble...do what I'm doing....but yr DW a copy!! :devil:

Share this post


Link to post
Share on other sites

Every child's different, so while I knew that for my lad, being told about his AS was the best option, for others it may not be so.

I felt C should know because he was becoming so aware of being different and wanted to know why the other boys called him 'Mr Bean' all the time. Poor wee sausage! So we sat down, and like many others, I started by asking him why he thought he had 'helpers' at school, why he went to see his CAMHS lady (psych) etc. Then i went on to explain that the doctor thought he had AS and what that meant. I wasn't aware that there were books out there to help me at the time! One thing C found very helpful though was when I pointed out some of my common foibles to him- like nail-biting but odder!- anddid the same with other adults he knew well. I explained that EVERYONE is different and does things that they might find comforting but other people see as odd- I know that at high school I was viewed as a bit of an oddball! He was able to understand thhis, which has deepened as he's aged.

I know this approach isn't suitable for every kid with an ASD, but I did me best at the time.

Hope those of you dealing with this find a way that helps your child to understand- best of luck!!!

Esther x

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...

×
×
  • Create New...