To diagnose or not??

[Unfitmother]

DS is 10 now and has been receiving help for SEN since pre-school. He has a statement of SEN on account of his social and communication problems. Saw a peadiatrician a year ago who suggested ASD abd referred him to a psychiatrist for diagnosis. DH flipped at this, saying "over my dead body", he's very concerned about our very bright child being labbelled for the rest of his life.
We're still waiting to see the psych and have been told he won't be seen until Aug '08.
He's due to start high school in Sept and the school we've requested has an Autism support base which he won't be able to access without a diagnosis. His next review meeting is in March and he won't have seen the psych by then.
Saw the peadiatrician again today who said I could quote him as saying that DS has ASD but I know how strongly DH feels about it, though he has come round a bit!
Anyone else got a DC with ASD and how did getting an official diagnosis affect the support they received?

Thanks in advance!

[bobsmum]

I'd like to see how this thread pans out - I've got a thread going about my ds who's just at the very start of school. He's only 5 so very young, but I do sometimes wonder if the school would benefit from him having a dignosis. Maybe even if they get more support or more access to professional help and intervention. Not sure if that's the case though.

[staryeyed]

I am always in favour of diagnosis because it has opened so many doors for us. Loads of things are not accessible without one.

[dustystar]

I personally would go for a dx if you can get one. It doesn't change who your child is and it can help you access support for both ds and you.

People are scared of labels but sometimes they are useful. My ds has no dx yet but has many traits of ASD and ADHD. He also has a statement and 1:1 support to help with his behaviour. I would far rather other people realised that his 'problems' are due to ASD/ADHD than just write him off as a naughty boy.

From reading several books written by people with ASDs it would seem that most times when they got a dx and realised what was 'wrong' it was really helpful for them.

[Unfitmother]

What sort of help have you recived that you couldn't have got without a diagnosis? He's got a statement already.

[daisy5678]

Well, the autism placement, for one. Plus most authorities have autism outreach teams who can come in and advise schools. Very useful I feel!

My son is also statemented and was even without a diagnosis. Since then he'd had the ADHD dx and now the ASD dx and his support levels have risen because they recognise at the SEN dept. that there are more and more complexities emerging as he gets older.

[wooga]

Getting my ds diagnosed has enabled me to go on an Early Bird course run by the NAS (very helpful), also I feel that ds's school's taking things more seriously than before.
Still got to fight for a statement though.
You're lucky your ds has a statement but if you need a diagnosis to access more help-I'd go for it.
Can i ask if your son is aware of his differences and if he knows about what the paed has said?Do you think a 'label' would help him realise why he is statemented etc and benefit him?I'm curious because I wonder when the time will come to tell my ds about his ASD.

[Unfitmother]

Wooga that is one of DH's big issues, how a diagnosis will affect ds. He's just said "what are going to say - you're autistic" he uses the word as an insult when I'm being a bit crackers.
We've never talked to ds about his statement, he knows he gets extra help and talks about his 'problem' but just mentions his bladder, he has nocturnal enuresis.
I'm confident that ds will rationalise it all, he's very literal!
I guess that's another hurdle we have to cross.

[wooga]

It's not easy to know what's best-suppose it's different for each person.
In Luke Jackson's book (Freaks,Geeks and Asperger Syndrome), he said (roughly) that he was pleased to find out the reason for his differences and relieved to know he's not alone.
Will wait and see I guess...tricky one.

[wooga]

I'd never say that Autism is to be ashamed of though-does your dh know much about autism?
If he can learn more about ASDs he may see that it's not something to feel embarassed/ashamed about-this is where diagnosis does help as it can access courses to help parents learn and understand more.
My parents couldn't cope when autism was mentioned (denied it for ages)but now they tell me about people they've been chatting to who know someone with ASD's in some form or other and they realise that yes, ds needs more help with things but he's a beautiful intelligent boy and they're very proud of him.

[Blossomhill]

It is hard I know but I remember when dd was dx and I did find the A word so scary. The CP who diagnosed dd said to me if she was epileptic, diabetic etc you would get that label so what is the difference and I agree.
The not knowing is so much harder IMO.

[Unfitmother]

that's what I said to DH but he doesn't feel that ds has ASD.

[wooga]

The problem I find is that when people hear 'autism' they think 'rainman' and will say to me "but your son can talk ok, and is affectionate etc.....what's his special talent?"
Such a broad spectrum but most people only know of far end of the scale.
I've only learnt things as a result of my ds.

[Unfitmother]

We have a niece with severe autism, no speech at all and profound difficulties, we're both also involved in a disabled childrens charity which has many kids with severe autism. DS is on the opposite end of the spectrum so it's hard for him to get his head round it I think.

[wooga]

I never thought my parents would accept it, just takes time.

[wooga]

By the way you definitely don't sound like you're an unfit mother!

[Unfitmother]

It was from a very amusing column in a newspaper which used to really make me laugh but thanks!
I think DH and I will work out what's best for DS. In some ways it's good that we have to wait so long for a diagnosis, it gives DH time to think.

[dgeorgea]

Hi Unfitmother,

Reasons for diagnosis, well he might not have ASD, though I would imagine by now you will have a good idea if he fits the criteria.

With a proper diagnosis you can better advocate for your child. It is a lot easier when you have a specific diagnosis. The school can call in appropriate help quicker.

Your child will not be 'labled' for life. It will be their/your choice who knows. Most people who know my daughter outside of school are unaware of her diagnosis.

It can actually help your child to get on in life, and is not a hinderance. My daughter is expected to As and A*s at GCSE levels and wants to go to university. Having a diagnosis means we are already talking to colleges about her doing A levels and what support is available, both for the transition and when things get too much for her. We have also spoken to her preferred universities to ensure continued support will be there.

Many employers now will accomodate needs if the person meets the criteria. This can be particularly useful in the early years in work where challenging behaviour can be accomodated and support provided.

However it is up to the individual wether or not to declare their disability. If they are able to function generally without support then there is little need to declare their diagnosis.

We all carry around lables that others put on us. My daughters closest friends are all aware of her diagnosis and understand that her 'odd' behaviour is due to her autism. As a result they accomodate these and understand her need to be spend time alone to be able to wind down. They all know if her behaviour is putting the friendship at risk they can talk to us about it. They also make sure she is safe. So if they are out and they have a fall out they make sure she gets home safe. They are also fiercely protective of her and will stand up for her if someone starts picking on her.

They all appreciate her friendship and what she has to offer. Plus they respect the fact that when they fall out with each other she doesn't take sides and values all her friends. As bitchy as they get with each other none have yet used her autism against her.

As I'm sure you know, there are no hard and fast rules and each persons/family experiences are different. Diagnosis doesn't change the child and it can make it easier for others to accept your child for who they are. As far as we're concerned diagnosis has been a completely possitive thing.

[Blossomhill]

dgeorga ~ thank you. Your post is very inspirational and gives me hope for my dd, who sounds like she will be similar to yours. My dd is only 8 atm

[Blossomhill]

I know jellyhead and I agree. Sometimes I get so overwhelmed by the fact my dd has a condition that is life long. However it also means I know (and those that need to, very particular due to far too many ignorant comments made ) and can help dd, which is a major benefit. Before the dx we all skirted around it, including the school and we all knew she had it but just not officially. Now we can talk about it and call people like the asd outreach team in.
I just feel like there is so much that needs to be learnt about autism.

[dgeorgea]

I just wanted to add, that one of the hardest parts of finding out a child has autism can be for parents accepting it. But I personally believe this is essential in ensuring the best outcome.

One of the hardest decisions for us was when and who would tell our daughter that she has Aspergers. This was very important to us because of what we had learned about the way they take things literally. I personally was very determined that when she was told the possitive aspects would be emphasised, the negative aspects would be presented as challenges.

In the end she usurped it all by asking in a meeting what it was. So I told her. I explained it made it easier for her to learn because she can concentrate on things a lot easier then most people, it helped her to be a good person because rules and routine were important to her, and a fantastic friend because she is a very loyal friend and has strong morals on what is right and wrong.

As mentioned she was told she told she does face some challenges. That everyone has challenges during their lives that they have to overcome though hers would be a little different. IE making and maintaining friendships, learning to cope with changes etc.

I also explained it didn't stop her doing anything she wanted in life, if she was willing to work hard for it. So it was not an excuse for not being able to do something or to excuse bad behaviour. She accepted this and has carried on determined to get on in life.

This realy is not a criticism to any parent, as our children are so different as are our experiences, but I am saddened whenever I meet parents who seem fixated more on what their children cannot do then what they can do. It is important we remain realistic on what we can expect our children to do long term, but if we are always negative about the condition and our children this becomes a self fulfilling prophecy. If a child is used to being told they cannot do things they will not believe they are capable of doing anything.

Just as sad is missing the small successes and accomplishments.

The start of this though has to be an acceptance by parents and then a proper understanding of the strengths and weaknesses it brings.

It is not an easy journey, and big hugs to all of you going through it.

[twocutedarlings]

dgeorgea - I just wanted to echo what blossomhill said really, its really nice to read positive post from mums who are further along IYKWIM. We are at the very begining my daughter is 5 she also has AS. Thankfully we got her Dx just before she started school in september. And after a very bumpy start she is now doing really well.

[Unfitmother]

Dgeaorgea - you've made me cry!! Thank you!
You've summed things up so well, I'm showing DH these posts and can't wait for him to see yours.
I posted this message on another board and had a couple of replies one was which I should aim to get a diagnosis as it would be easier to claim DLA. I wanted to scream that I hoping he's going to university FFS!
I went on a Open day to his future High school and a boy who was in the year above DS last year who I know has a diagnosis of ASD was happily taking part in a demonsrtation of 'The Weakest Link' and was pretty good too! He was clearly fully integrted with his classmates as I'm hoping Ds will be.
Thank you for putting so much into your replies, I can't tell you what they mean to me. You have renewed my hope for DS's future.

[crimplene]

Unfitmother

One of my closest friends has an ASD -he only went and got a dx a few years ago in his late 30s and it has opened doors for him as, not only does he understand himself far better but it's easier for him to ask for the help he needs - plus he's been able to access services like a suppuort worker for work and DLA. Not that he needs the money especially as he's an expert in his field, has an oxbridge degree, postgraduate qualifications and a very enviable salary and all the trappings of success, not to mention a love life that's far more entertaining (for him as well as the rest of us!) than anyone else I know.

He doesn't use the label in contexts where it's not going to help him, but he does use it if it's going to be useful.

btw I'm in the (grim) process of claiming DLA for my DS (not ASD); I'm hoping he'll go to university as well. You are probably entitled to it.

[dgeorgea]

twocutedarlings, just to clarify, I'm a father, not a mother. I am always happy to talk to other fathers, especially those who are having difficulties coming to terms with their childrens needs as I can often see things from both sides.

Unfitmother,
We struggled for a long time whether or not to apply for DLA, mainly because we did not think we would qualify. In the end we did and were shocked to find we got it, despite being extremely honest about what her needs were. ie she is capable of independant travel however her reactions if anything goes wrong would mark her out straight away as being vulnerable. She is capable of showering herself, but needs someone to check she doesn't have the water too hot and needs help with her hair. We got both the care and mobility allowances at the lowest levels.

I'm not even sure how to begin describing the difference this money has made to us, and our daughter. Much of what we use the money for benefits us. She can listen to her favourite music as we have Sky, and follow her other interests. Part of the money goes to pay for a mobile on contract so the OH is always contactable, and as she doesnt go anywhere near the number of free minutes our daughter uses to talk to her friends. And as part of the deal we get free internet which we both use.

For our daughter though the biggest benefit is she gets £40 a month pocket money. Okay daddy is more generous then mum and she doubled her pocket money by listening to dad - one of the few times she has done this. This has done so much for her sense of independance and freedom. She got into goth just before we got DLA and as I'm unemployed I wouldn't spend our money on the things she wanted. So she has been able to invest both time and her own money in the development of her own image. She pays for her own magazines and budgets for larger items she wants. She saved three months to buy her own guittar. She now pays for tickets to go to see her favorite bands.

She is also able to go out with her friends a lot which is encouraging for us as it addresses many of our original concerns about her travelling independantly. She also gets to go to the pictures much more. We were able to get her a card so she pays but the person with her gets in free. She goes with friends and normally they pay half the cost to her or if they cannot afford then they can still go.

As I said she expects to go to University and the school have no doubt she will get there. Applying though was one of the best things I've ever done and as I've said gone a long way to preparing our daughter for an independant life. Even if you don't need the extra give it some thought. They can say yes or no. If you get it what you do with it is realy up to you. If you want your son to go to university put it away and save it up for him. One major concern for us is we know we will not be able to offer her much support unless I get a good job so she will start her working life with a big debt. With a few years to save and a regular income to invest you could help to alleviate your son, and you, from similar concerns.

Sorry for the long post, but like you we initially dismissed the notion of applying and our daughter would have missed out on one of the few pieces of help she is entitled to and her life would have been much poorer for it - not just financially either.