Can I ask - would you go for diagnosis for suspected high functioning autism?

[AquaBlueBlack]

School (teachers, Senco and external support), DH and I are all similar in our thinking that ds has high functioning autism. He is functioning well academically, struggles socially and school are putting in place support to help him in the school where he struggles the most. At home he genrally is wonderful, though we do recognise the issues in social/ group situations but we support him through these. We are now being asked about pursuing a diagnosis. I am really in two minds about this but can't pinpoint why. AIBU to feel this may not be the best route and focus on strategies to support him is more important? any advice?

[GurlwiththeCurl]

OP, I am so sorry. I didn't mean to upset you! On the positive side, we were told when DS was very small that he would probably never speak properly and that he would never learn to read or write.

Well, that was a load of old rubbish! He can read and write very well and has a fabulous vocabulary. He could not take exams so has no GCSEs or A Levels, but he did go to FE college and get quite a few vocational qualification, of which he is very proud.

He was the clingiest child, but his hobby now is travelling around the country visiting major cities all on his own. He has just come back from a four day trip to London!

He is sweet and kind and looks after me (I am bedridden with a chronic illness). He is thoughtful and helpful and when he got his job we were all thrilled.

ASD is different with each person and who knows what your son will achieve!

[AquaBlueBlack]

Thanks gurl and please don't feel you need to apologise - I really value the honesty.
At the moment my son is doing very well, in every day life people rarely notice the things I worry about - he is often described as a handful, boisterous and bit naughty, but also as kind, intelligent, thoughtful and logical. But they don't see the nuances behind this that we, and thankfully his school, do. So for example this morning he ended up hitting his little brother hard, this was all due to his brother wanting to play with a boat and the boat didn't have people in it - DS1 could not get his head around the fact that it was ok for ds2 to drive the boat without people as he was playing, it wasn't real, but ds1 was just insisting it couldn't happen logically so why play that game - and ended up getting very upset about it and screaming - not particularly at anyone just in frustration (this scale of episode is relatively rare). I separated them for a bit and ds1 played lego - he then came down and spent this wonderful half hour with me explaining how he'd built this rather brilliant car and all the modifications he had made and why - it was really lovely, he'd thought about the mechanics but also creating space so he could help people who hadn't got a car. What I mean is his quirks are so wonderful and also challenging but what we face are currently subtle issues. this discussion has been really helpful in helping me position my thoughts not just in the now where we are managing quite well but also to consider future needs. So in short I am just thankful for every-ones honesty.

[FaithAscending]

Oh I wanted to say as well, I'm getting on ok in life! I've got a degree, vocational qualification and I've stayed within the same place (moving around a bit!) for over 8 years. A diagnosis of ASD isn't always a doom and gloom prognosis. :)

[Boomingmarvellous]

Maybe talk to your son and get a feel for how he would respond to seeking a diagnosis (which would undoubtedly get him help where he needs it). Maybe 'a friends son' has hfa and how it affects his life, diagnosis etc?

[Excitable]

Thanks @aquablueblack for posting about this issue. I'm in a really similar position with my DD (7). I went in to see the Learning Mentor on the last Friday before half term to discuss a specific issue she's having at playtime and finally worked up the courage to voice my suspicion that she is HFA. Thankfully the Learning Mentor agreed. But she has advised waiting to get a diagnosis. She says that the school has already put all the support in place that she would be entitled to even with a diagnosis. They've recognised the need and they've responded to it. Having read all the views here and discussed the issue with my friend who was a teacher in an SEN school, I'm beginning to disagree. I can't see what harm there might be in having an early diagnosis. And the Learning Mentor is thinking about one specific part of life with HFA (if that's what is going on). I would like DD to have support from health professionals as well as an educational specialist.

So I have booked an appointment at the doctor's to discuss whether melatonin will help her sleep but I need to discuss the possibility of HFA with her before we go. She doesn't like surprises. I really don't know where to start! @Bloomingmarvellous that's an excellent suggestion and I do have a real life friend whose son has recently been diagnosed, making him very happy. So perhaps it's more accurate to say, I don't know where I'm going from there. I don't want to tell her she definitely has a thing when we don't know what she has and I don't want her to think that I disapprove of her way of thinking. This isn't about her fitting in or losing her individuality.

[imip]

excitable I find it is disconcerting that schools think that if they recognise the need in a child and provide for it at school, then it's ok, they don't need a diagnosis. Do schools things that a child stops existing outside school? Families need that support also, children are at home for more hours than they are at school. It's really a bit arrogant for schools to think that they can substitute the work of professionals.

The more I think about it, the more mad I get that schools will agree that a child could have HFA, but it's ok, don't seek a diagnosis, we can handle it all at school. I don't mean to be rude about teachers, but they are not Drs or psychologists, or occupational therapists or SLT.

[StatisticallyChallenged]

Totally agree imip. They have no way of knowing when it will start becoming an issue and when the child might need the protection of a diagnosis.
I was lucky in that when I realised what was going on and that i really did need a diagnosis I could afford to get my gp to refer me privately. Saw the specialist - sane person I'd have eventually seen on the nhs - in 3 weeks rather than 6+ months. I'd I'd had to wait for nhs I'd probably have loat my job

That said I agree asd isn't all soon and gloom and I'm doing pretty well - late 20s, married, RG degree, working on professional qualification, good salary. Many aspergers / asd individuals do well.

[noblegiraffe]

I'm a secondary teacher and am also rather about primaries who say that you don't need to push for a diagnosis because they can support your child without one. Children get older and move to different settings!

So many children with ASD struggle at secondary for one reason or another. My DS (6) has just gone on the waiting list for assessment and his primary school were all 'Are you sure you want to go for a diagnosis?'. Of course I am. If he's autistic, then not getting a diagnosis isn't going to change that, the only thing it will change is the support he receives and how quickly any problems are anticipated and addressed. As far as I can see, there's no 'safe' time, past which ASD isn't a problem. You can't say 'oh well he made the transition to secondary ok, no need to get diagnosed any more'. I had a student who had got to Y11 doing well at school, then major problems which messed up his GCSEs. He was diagnosed just before his exams, but if he had known all along his issues could have been dealt with much more effectively.

[grumpmitchell]

Hi, just came on here to say thank you for an incredibly useful and reassuring thread. DS was finally diagnosed this week, at almost 13 and you've helped me to see the ways that this diagnosis will help him. Thank you to all those who have shared

[Excitable]

I'm not angry with the Learning Mentor, I think she's trying to say there's no need to worry at this stage. I don't get the feeling that she'll stand in my way, quite the opposite, I'm sure she'll back me up.

But yes, diagnosis now is probably best.

How did others prepare their kids for the diagnosis journey?

[QueenStreaky]

I told my son that we were going to see some people who would ask him some questions, play some games with him (ADOS), and hopefully they'd be able to tell us why some things are hard for him and give him some help to make them easier. Do be careful not to make promises though, because it's not always an easy ride and there may not be anything solid at the end - there is no guarantee of any support or intervention, but it does help the child to understand themselves better and have a reason for the way they function.

[cabsarehere]

I had an almost identical thread a week or so ago regarding my 12 yr old DS, only his schools have never mentioned they suspect ASD. If they had I would have pursued assessment much sooner.

He didn't have any behavioural issues at school until he was 9.

I have decided to continue with the assessment, my main reason for being apprehensive was because I am worried about he will take the news, he is at a sensitive age.

[Youarentkiddingme]

Wise words imip

I totally believe a dx is best for the person.

I explained to DS the assessment process as best as I could. I explained to him that as he was getting angry at X,y and z we were going to see a lady who would chat to him and see if they could help him. I didn't mention ASD but did say it maybe his brain had different wires and that would also explain why there were some things he was amazing at that others couldn't understand.

Whilst sat in waiting room for ADOS DS was reading a board on ASD. He read it through, looked at me and announced "that's what I've got mummy. I'm autistic" (he was dx after the assessment).
But it was like a lightbulb moment for him and also instant relief that his struggles had a name iyswim?

I will offer a word of warning. We are currently in a situation where because DS has a dx of ASD the school think that means he fits a selcific box and as they've done loads of training they know what he needs. It goes in place of listening to what he and I are saying.

That's why it's important to know your child, what they need and have a clear plan in your own head at all times.

[imip]

statistically it always makes me very happy to hear of those who have gone on to study, work, have a successful relationship. But I cannot drag myself away from the statistics that show that only 15% of adults with autism are in full time employment. It seems so simple to me that adequate support would boost those numbers, so that adults with autism can work full time, and contribute to society along with any other adult. In just simple financial terms, the cost of this statistic would far outweigh the cost of support at an earlier age.

We are embarking on the ehcp process at the moment, and I shall have that statistic to hand each time I am fighting for something for dd (because that's going to be inevitable, right ). My brother in his mid 30s, undiagnosed ASD, took 10 years to do a three year degree. Has never worked a paid day in his life. Such a waste, my parents refuse to see his ASD now, or at least encourage him to seek a diagnosis.

Gosh, I'm feeling all hot headed now

[QueenStreaky]

At the time we were pursuing diagnosis, school staff said they wouldn't dream of suggesting autism or any other condition - it was considered outside their remit to do so. They expressed 'concerns', and had we not already approached GP for referral they would have recommended that we do so, but they were clear that they'd have described presenting symptoms rather than a suggestion of a reason. I suppose it will differ between schools though.

[StatisticallyChallenged]

TBH, I'm not sure I entirely believe that statistic (and I get statistics, it's my job to!)

But, I was only diagnosed recently as an adult and only because I actively pursued it. The industry I work in is full of adults who are in many ways successful but who I am pretty confident would meet the diagnostic criteria if assessed now, but who do not hold diagnosis because when they were children we weren't nearly as good at diagnosing as we are now. I wasn't picked up on at all whilst I was at school. Neither were either of my older brothers both of whom I am fairly certain would be on the spectrum. I also have zero contact with any sort of autism charity - as I think would be common for those who are "doing well". I suspect that the individuals who were assessed in compiling that stat are essentially a skewed sample because in many cases only those who are more "severe" for want of a better phrase would have been diagnosed/recognised historically.

[Excitable]

youarentkiddingme I do struggle to have a clear plan. I know what she needs when I'm with her, but her behaviour can be erratic with others. Not at the moment, because she has a really good teacher, but I often think I could identify the source of the problem if I were there. They tell me when she melts down at school, it comes out of nowhere, but that can't be true. There's always a reason.

Do I need some stories to tell the GP to strengthen my case?

[imip]

Yes, I do think that the statistic will rise for the better in 10 or so years time as HFA is better respondedto and supported, but I can only look at my own personal experience with DB (though admittedly not diagnosed), but I know siblings of adults diagnosed as adults and also have been unable to work. And, of course, not all autistic adults will ever been able to work. Lots of grey areas. However, that statistic is surely much higher than it could be, and thus good evidence when fighting dds corner for support!

[Goadyflattery]

stats that is reassuring for me as I worry about dd. My dh I am sure is on the spectrum, he works alone now as finds it easier, he is a statistician too

[StatisticallyChallenged]

I'm an actuary rather than a statistician, but if you have a DH in that field I'm sure you will get where I am coming from with there probably being a lot of undiagnosed Asperger's/Autism...most of the places I've worked have, on reflection, been filled with individuals who are fairly obvious once you know the signs!

Working from home was the saviour for me PolterGoose - still full time but doing 1-2 days from the house. I don't do it in my current job but it's a better office environment, much less noisy and crowded, better lighting, better controlled temperatures, headphones readily accepted!

[jonesthegirl]

My DS has Aspergers/ dyslexia he has an ECH plan in place. i have posted on other threads about him.

However, as someone in their second part of of year 1 Open University (finding it difficult) who has Aspergers/Dyslexia and Dyspraxia symptoms.

I found IMIP 'Rubbishing' her brothers degree because it took ten years to compete 'Offensive'.

There are two other things to consider : The first being not even' family members' can understand how HFA/ASD effects /destroy your life.

The second point ' Nobody' least of all a 35 year old wants to be told by everybody else ' Told you so' .

I KNEW ALL ALONG YOU WERE AUTISTIC !.

It is not a badge Autistic people want posted around...

[imip]

jones I don't rubbish my brother's degree at all. I'm upset that a lack of a diagnosis means he has been unable to have the support he needs to finish his degree in the appropriate time frame. I'm upset that he is unable to pursue work in that area because he is not appropriately supported. I'm upset that he still lives at home, has no friends and no relationship. That's what upsets me!!!!!!

You're right, even as a family member I can't understand what ASD is like for my db or my dd. and that is completely upsetting. Try as I might, I can never fully understand how hard life is for my own beautiful dd. and that is with a diagnosis.