How do I tell my children?

[Janey]

Hi everyone, this is my first post here so here goes...

 

My 8 year old son was finally diagnosed with mild/moderate autism a week before the summer break. It has taken nearly four years to get this diagnosis and now with the school holidays I feel left high and dry with the dx with no one to turn to. Thank goodness I have found this forum.

 

My main dilemma is how or even if I should tell all three of my children what my youngest one has been diagnosed with. Would they be better off not knowing? Or shoud I have not pushed for a "label" in the first place? Also, my 14 year old son shows autistic characteristics but unlike his younger brother is achieving well at school. Do I have him investigated or not, or will he grow up and resent the fact that I didn't bother with him?

 

Sorry a bit of a garbled post. I wasn't shocked to hear that T.was on the autistic spectrum as I knew he was, but now a few weeks on I feel terrible, very tearful, is this normal?

 

Janey

[jb1964]

Hi Janey,

 

Glad this forum is helping you - there's some wonderful advice and help here.

 

It's pretty normal to feel as you do - no matter how much you know or think you're coping it still takes time - some longer than others - our daughter (14yrs) was diagnosed just under 2 years ago - and I often get tearful and weepy.

 

As for the other questions, I'm afraid I can't help there - our little one is only 4 - so I've not had to think about it yet - although she is aware that her big sister get's mad or sad over things - we'll probably leave it a few years before mentioning it to her as my eldest doesn't want anyone to know.

 

Same really for your older son - we always thought my daughter was different but didn't really know why - obviously when you're aware of ASD's everything seems more apparent. When your son was being assessed was your older son there (perhaps at some of the home visits etc) - and you could just have a chat with the team that assessed him, I've not really been down the route of getting an assessment/diagnosis for ASD as lots of people on here have - because our daughter was diagnosed after referral for anorexia.

 

I'm sure you'll get some really great advice soon.

 

Take care,

Jb

Edited August 20, 2007 by jb1964

[ellisisamazing]

Hi Janey,

 

I also don't really know how to word this one....My darling son is just turned five and his NT sister was 3 a few weeks ago. But I think you will find children are very perceptive and in their own way they will know something is different. In our case, my then two year old who is extremely advanced for her age and peers picked up on Ellis's difficulties without any word from me and Hubby or anybody else (I would have no idea how to explain to a toddler about ASD!), But she would watch Ellis intently and one day told her Dad and myself that, in her words..."Ellis is broken....He can't talk, so is broken"....that for a small child to pick up on is incredible! She is fully aware of what upsets him and is sooo gentle with him and very comforting when he is in meltdown. It is so lovely to see the close rapport they have with one another, both of them are beautiful and amazing!

 

Lisa xx

Edited August 20, 2007 by ellisisamazing

[ASue67]

Hi everyone, this is my first post here so here goes...

 

My 8 year old son was finally diagnosed with mild/moderate autism a week before the summer break. It has taken nearly four years to get this diagnosis and now with the school holidays I feel left high and dry with the dx with no one to turn to. Thank goodness I have found this forum.

 

My main dilemma is how or even if I should tell all three of my children what my youngest one has been diagnosed with. Would they be better off not knowing? Or shoud I have not pushed for a "label" in the first place? Also, my 14 year old son shows autistic characteristics but unlike his younger brother is achieving well at school. Do I have him investigated or not, or will he grow up and resent the fact that I didn't bother with him?

 

Sorry a bit of a garbled post. I wasn't shocked to hear that T.was on the autistic spectrum as I knew he was, but now a few weeks on I feel terrible, very tearful, is this normal?

 

Janey

 

That could have been me writing for advise! Mike is 8 as well and was dx with ASD on the last week of term. I have been going through CAMHS for the last 4 + years with him. Like you I have had no help, advise or support since the dx!

 

My eldest boy knows about Mike's dx and I got a book for him to read called Everyone is different (at least I think that was the name of it!!) . My biggest problem is how to explain it to Mike!!!! He thinks everyone else is different not him.................

 

I have been so up and down since the dx was made so you are not on your own!

 

Good luck with everything!

 

<'>

[sash]

hi Janey,

I am new here too, so Im sure other people will have much better advice than me to give!

My son was diagnosed with Asperger's recently and to begin with it was almost a relief. I felt guilty as I was quite pleased to actually get a diagnosis as I had suspected for a while and things all suddenly seemed to make sense. However, after a couple of weeks I too felt very tearful and down. It felt like grieving. It was like I'd been on a high initially all geared up to help my son and understand him more, then a bit like reality set in with the day to day isssues. I feel a lot more positive again now though but am aware it'll probably be up and down. Sending a hug <'>

Edited August 20, 2007 by sash

[Cariad]

Hi Janey,

 

I know how you feel it took us years to get the DS dx. He was labelled as having tourettes for years and attaxia so didn't get any real help until he was 9!!! Only recently things are coming together after 9 years of no support and the wrong schooling. I remember grieving for the boy I lost and would never know years ago, now I've accepted it and have pulled myself together(still have very bad days) and tried to look at the boy I have.

 

Also what helped me was that I got a social worker and got onto some respite through them and now things are slowly calming down. I think it's shocking how you are left hanging with nothing until they are diagnosed. <'>

[Bagpuss]

Hi Janey,

 

Welcome to the forum <'> Give yourself time, let it sink in, and take each day as it comes. The tears can creep up on you when you least expect them, even if you were expecting a dx. I went through a huge range of emotions, and still do. This forum has been a huge help, and joining local ASD support groups too. My youngest dd was dx ASD first, nearly 2 years ago now and then we decided to have our eldest dd assessed, as she had some traits (she was dx ASD at 2, later reversed...long story). She was dx AS last year. Your not alone <'>

[Bard]

My main dilemma is how or even if I should tell all three of my children what my youngest one has been diagnosed with. Would they be better off not knowing? Or shoud I have not pushed for a "label" in the first place?

Janey

 

Well, this isn't advice, it's just what happened to us.

I was delighted and relieved to get B's diagnosis, 3 1/2 years ago when he was 9, as suddenly a whole range of strange, annoying, aggressive and downright odd behaviour now began to make sense. It was like being handed a key to help unlock and understand what was happening on a daily basis.

His sister is 4 years older and very bright. She's also not a loving, caring, worrying type and was rarely protective or even interested in him. Most of the time, his existence just tended to irritate her!

When I explained that he had Asperger's syndrome, gave her Tony Attwood's book and answered her questions as best I could, she developed a much better relationship with him. She understood that most of the things he did that annoyed her were AS traits, rather than deliberately designed to offend her personally.

They still argue, but much less, and she distinguishes between teenage boy stuff and AS stuff fairly well.

However, she often uses her understanding to manipulate him into getting the outcome that she wanted!

But, as my dad would say 'That's women for you!'

For me, the label of AS enables him to access the support and understanding he needs to function in an NT world, especially at school, and I have no regrets about pushing for a dx in the slightest.

[krystaltps]

I was like you, Bard, when we got C's dx just over a year ago. For a long time I had blamed myself and to get the dx meant immense relief - not just for me - it meant C would get the help and support he so obviously needed at school. It has been a positive thing for C to know his dx too - his self-esteem had been so low, he often cried because he couldn't understand why he did some of the things he did and why he seemed so different from his classmates and siblings. The dx has enabled him to accept himself and he has really blossomed since.

I told the twins the same day I told C. They were only 6 at the time - but a lifetime of living with C meant they knew he was different, and sometimes we had to have different rules for C than for them. Obviously telling 6-year-olds is a bit different in terms of how you explain it - but it was important to me that they knew there was a very good reason why C can sometimes appear to "get away with things" that they don't. They readily accepted his dx and were concerned only that they might catch AS from him <'> .

I found the Kathy Hoopman books (aimed at this age-group) very useful when it came to telling C about his dx. He read one himself then we read another together before I told him. That way he had heard about AS, knew that it happened to other people and that he wasn't alone. I know your boy's dx isn't AS, but there will be some similarities in terms of behaviour, and if he's not a reader you could read them to him.

Also, there are books aimed at siblings too - I can't remember any titles or authors, but I'm sure an Amazon search would find some.

[Tally]

Hi Janey, and welcome to the forum.

 

I am an adult with AS. I was diagnosed earlier this year, but I have suspected for a few years already. When I realised I had AS, it was a big relief to me. It explained all the things I find hard, and why I can't fit in and make friends. It has helped me to feel happier about the way I am, and more relaxed about being myself. I really wish I had known while I was still in school, because that was the time that my differences were most apparent and distressing to me.

 

The possibility of autism was raised several times when I was a child, but every time my parents looked into it I seemed to make progress, and they dismissed the possibility. I wish they had looked harder, because I think my teenage and early adult years could have been easier if I had known about AS and had the right support in school. People held very stereotypical views about autism at that time though, so it might have been difficult to get a diagnosis for me anyway.

 

Based on my experience, I think it is important for an autistic person to know their diagnosis. You are the one who knows your son best. First come to terms with the diagnosis yourself. It's important that you don't present it as a negative thing to him. Then you will be able to make the right decision.

 

It could be important to tell your other children about your son's diagnosis. They will notice that he is different, so it will be very difficult to hide it from them anyway. It might be best to discuss it separately with your 14-year-old. You could explain what autism is, and perhaps ask him if he thinks he shares any of these traits. It would be very hard to get him assessed without his co-operation, but he might need some time for it to sink in.

 

There are several books written to help you explain autism to an autistic child, or to their siblings. Some of them are available through the NAS website.

[jlp]

It's very early days for you and perfectly normal to be up and down. You're pleased in a way that it's not just you being a terrible parent or whatever and that your child will start to get the support he needs and obviously you are upset because then you start worrying about the future and what it holds.

 

When my son was diagnosed 3 years ago I cried myself to sleep almost every night, I worried about whether he'd be able to learn to drive or live independantly, if he'd get married and have children...I was told by someone that absolutely no-one knows what will happen with their children, if they'll drop out, take drugs or become a huge success and although that didn't help at the time much it does a little now.

 

It must be very frustrating to get the diagnosis and it to be the holidays so everything is a standstill for now. I know when G was diagnosed I went int overdrive ringing around, joining the NAS etc, you just feel the need to be doing something. It's not long now though, 2 more weeks and you can ask for a meeting with school to tell them and to ask about additional support. Our area has specialist ASD teachers who liase with school and keep them on track with things like visual timetables, they also can organise 1-2-1 support sessions if needed - maybe your local council has something similar, ours is called Special Educational Need Support Services SENSS.

 

I told my son recently after he spotted me reading a book on AS and asked what it was about and then asked if he had Aspergers Syndrome. We've only briefly introduced it though and read some Kathy Hoopman books together too. We have a slight problem in that G doesn't have the perspective to be able to see things that he does - we read something about someone who often feels angry and he said 'but I don't do I' (he's often furious!) Before mentioning anything official we did give G snippets of information such as him having ears that don't like too much noise.

 

I'd probably tell the others, books for their ages are good. The NAS also does a 'Help 2' course on supporting siblings which I'm going on in September - we're struggling with the little one who is copying (I hope) but too little really to explain why G does things and G doesn't understand why L can be so difficult. There's also Early Bird Plus Courses and 'Help' courses which are a good introduction to ASDs and let you meet other parents in the same situation.

 

Take it easy, it's a difficult time xx

[Janey]

Hi everyone, thanks for your replies, it really helps.

 

I felt guilty as I was quite pleased to actually get a diagnosis as I had suspected for a while and things all suddenly seemed to make sense. However, after a couple of weeks I too felt very tearful and down. It felt like grieving.

 

Thats exactly how I feel, I have spent so long fighting for this diagnosis that I sort of lost sight of the implications. Now I've had a few weeks to reflect on things I have realised that the dx is just the beginning, although hopefully a gateway to some help.

 

With regard to my two older children K. my daughter is 12 and dx dyslexic she also shows some symptoms of ASD e.g extremely faddy eating and sleeping problems for which she has received psychiatric help to no avail. J. my son is 14 and has really poor eye contact, looks awkward in social situations and although he has been lucky enough to have a group of great lads as friends, still prefers his own company.

 

When I realised I had AS, it was a big relief to me. It explained all the things I find hard, and why I can't fit in and make friends. It has helped me to feel happier about the way I am, and more relaxed about being myself. I really wish I had known while I was still in school, because that was the time that my differences were most apparent and distressing to me.

 

Thanks Tally, your comment is much appreciated

 

Janey

[pragmatic]

Hi Janey and welcome to the forum

 

Again I will not give advice but will just say what happened to us. My older son is 11 was diagnosed with AS when he was 9 and a half although we (or rather I and everybody else except his father) that something was not quite average was happening with him since he was 2. He is very very bright lad but he can be really awkward and can be really really silly in most of events around what we call 'social life' which for many did not add up straight away. When he had his diagnosis i was not sure whether to tell him straight away or wait for the right moment. then just after his 10th birthday he looked really sad and started a lot of questions about why he is different, he hates having a helper, he knows that he thinks differently than his friends, he sees things differently and soon. I found this to be the golden opportunity to tell him all about it- to my surprise at the time but it is really understandable now he was very 'happy' he was relieved. We spent sometime looking together at the internet and researching what is AS. I was really positive about and told him that this 'different' way of thinking can be really good and great scientists and inventors are now thought to have this or similar syndrome.

 

 

His younger brother was 7 at the time and they youngest was four. After few weeks my husband and I took the middle one out for some ice cream and a 'light conversation', when we told him about his older brother and explained why he sometimes can be annoying and that he really can't help it. It has been over a year now and for both of them the results are great- my middle one actually asked my 'can I be Aspie like my older brother- I really like him'-- that was great to hear. However it is not always like that and the middle one many time get fed up and can't see any excuse no more to his older brother behaviour (well understood- of course).

 

My only advice to you would be to follow your guts and your unique ability of reading your children- be prepared with materials as you will be fired with loads of questions- I found a couple of books useful:

 

All Cats have Asperger (very funny to the point picture book)

 

and brotherly feelings (me my emotions and my brother with AS)

 

Good luck and take it easy there is no deadline

[jo4themo]

Hi janey

Niamh was diagnosed with Aspergers when she was 6 and a half, but we had suspected she was on the spectrum for over a year before that , so when she was finally daignosed it was a relief as we knew she would get the help she needed. We did tell her that she had Aspergers and a simplified explanation of what it is. However, I don't think it really sunk in to her at the time. I recently mentioned it to her again and she then spent the evening saying (very happily!) "I've got Aspergers!" over and over again.

Her sister (whos is 6 and a half) has always known about Niamh's physical disabilty as she has always been ahead of her big sister in the walking/running/cycling etc stakes. We told her when Niamh was diagnosed (she was 4 then) but I think she was a bit youn, however she takes Niamh as she is and knows she has trouble making friends and mixing with others.

 

I agree with the others about the Kathy Hoopman books - we have one and it's a really good book. I have told Niamh that the main character in it as Aspergers and she got very excited but has yet to read it. I have also read Luke jackson's book "Freaks, Geeks and Aspergers Syndrom" and his mother's book "Multi-coloured Mayhem" both if which are very good.

Niamh also has a book called"Can I Tell You About Asperger Syndrome?" which is aimed at telling children aged 7 - 15 about Aspergers. It tells it in a simple way and helps children to understand the difficulties faced by a child with AS - not sure if this would help you but its a good book

Emma

Edited August 21, 2007 by jo4themo