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?

[AttilaTheMeerkat]

I would also suggest you post on the SN; children part of this website as well.

You need to think longer term as well.

I would pursue a diagnosis for precisely the reasons that Keeptrudging wrote in her initial post to you. It can also open doors that remain closed off.

Have seen too many children with a whole gamut of SN fall apart particularly at secondary school because they have not got their additional needs met by that time. This is also because teachers are not generally trained at any great length in special needs and some of these children do get ignored in a classroom particularly if they remain compliant and quiet.

[AttilaTheMeerkat]

"I do think that sometimes teachers can be a bit quick to suggest something like ASD"

I did smile wryly to myself when I saw that comment. In my own experience many teachers have no idea of its ramifications both to the child and wider family. On a much wider level as well it is still the case that children with special needs are more likely to be permanently excluded from school.

Aqua - see a "label" for what it should be - a signpost to getting more help.

[NettleTea]

Also a diagnosis carries on into adulthood. Means job protection and the right to ask for some work conditions as a right, rather than at the whim of your boss.
Ive found that actually the social problems do not improve, they actually appear to be getting worse in our case. As he gets older it becomes more and more obvious how out of synch with the others he is.
My daughter says she doesnt have social problems (ha) but then I said she stays at home all the time and only mixes with people she likes, so of course she doesnt. She has clearly said on many occassions that she hates people (thats ALL people), and doesnt want to be near them

[Goadyflattery]

Nettle according to my dd, everyone else is a weirdo

[cankles]

OP there's a lot of useful advice and discussion on this thread, please don't hesitate to get your lo diagnosed. It's not about labelling it's about accessing services and support - signposting. It's a lifelong condition - that's really important to get our heads around. As your lo grows up the demands on him will become greater - particularly in the next few years with school.

From your lo's position - this will also provide him with a concrete explanation about why he finds particular things/situations difficult and that's very important in terms of building, maintaining and sustaining their self esteem.

Good luck x

[NettleTea]

my son celebrates his weirdness. But then wonders why people wont play with him.
DD doesnt think she is weird. But she wants to kill all the people with fire. (not actually of course, before anyone calls SS)

I suspect it may be difficult having no reference point. Ive been called weird all my life, but dont feel weird. Dp is well along the spectrum, as are both his parents. My gran was what you would have called 'eccentric' and brought me up to say 'who wants to be normal anyway'

and most of my friends are the odd ones out - the ones who didnt really fit the cliques but I find very interesting

[AquaBlueBlack]

OP there's a lot of useful advice and discussion on this thread

There really is, thank you all so much - it has given me a lot to think about and filled in a lot of the gaps I was worrying about. Thank you. We are meeting with teacher and SENCO in the next few weeks so will go forwards from there.

what you have done is made me reconsider the pursuit of a diagnosis and dispelled some of the myths i have had. My main priority is the fact that i have a very happy little boy, I want to do what I can to preserve that and help equip him with the right skills and support to ensure that any barriers in his life presented by this are manageable.

[AquaBlueBlack]

PS. sorry I haven't responded to all the responses - I have read and taken each one on board and really appreciate the breadth of opinion and views given.

[NettleTea]

Yes - it takes a while to get over the 'crap parent' legacy.
My daughter's EHCP is currently being written and I am happy that within it it the LEA acknowledged that a particular member of staff in a small teaching unit acted in a way that was detrimental to my daughters wellbeing, threatened me with court proceedings and failed to take notice of my suggestions that there may be an underlying autism issue. Her actions meant that I had to deregister her from school, and the trauma meant that she refused to ever contemplate going back into the secondary school system. Which obviously had/has a knock on effect on the rest of our family/life/work. If a diagnosis can prevent one more child/parent having to go through what we have had to deal with, to prevent their lives being ripped apart by the know it all attitude of a jumped up little so called professional, then get it under your belt.

[bumbleymummy]

I'm glad you found the thread helpful Aqua. I hope everything works out for you

[5madthings]

I would sat push for a diagnosis. We didn't get one for ds2 until he was 13. We had seen camhs in yr three at primary and been told yes he had traits but we wrre coping so gp away basically. As we left they said it may be that everything falls apart at high school and they would see us again then. I didn't get what they meant, in yr 5 and yr6 primary he had the same teacher who 'got' him and so school was Ok. Then he went to high school and fell apart. He is yr 9 now and can only cope with attending part time, we are having to push and push to get appropriate support, it's been a nightmare tbh. How o wish we had pushed when he was younger so he could have transitioned to high school with a plan in place rather than be battling for a plan now as he goes into his gcse years and I am contending with teen moods and his asc and still grappling with strategies ourselves as parents.

Reading this thread I have been nodding along to so much.

[ricketytickety]

I would go for it because unfortunately not all teachers he comes across later on may recognise his needs. Whose to say the senco at secondary will? Whilst his primary understands his secondary might not. With a diagnosis you won't have to fight for help or understanding later on.

[GurlwiththeCurl]

I cannot add much to the very helpful advice on this thread, but will make a couple of comments.

My DS is now 26 and was diagnosed very young. He has ASD and learning difficulties. As a toddler and whilst he was at primary school, he behaved like a little doll - he was so very "good" and happy that we were worried! He didn't know how to be naughty. He had delayed development and walked, talked and met the other milestones quite late.

But all of this changed when puberty hit. He had a lot of changes to deal with at the same time - house move, school move etc. when things got too much for him at school he would hide in the toilets and cry. But when he got home all hell would break loose - massive violent melt downs. He still does this occasionally now, but we have learned how to react much better.

He now has a part time job, still lives with us and manages quite well socially, although has difficulties that we have to help him with on a regular basis.

What I am getting at is that you have no idea, OP, how your son will develop. He is only five and I am so glad for you that he is happy. But you have a very long journey ahead and he will never be "cured" of his autism. One day he will be an adult with autism and you may need to access all kinds of help to support him. We still get DLA for DS and have had to talk to his workplace about his needs - this has enabled him to keep his job!

I wish you all the luck in the world.

[ricketytickety]

Sorry, that came across very negative - I'm not saying things would be a battle for you!! Teachers are great with sn as long as they have the info they need.

[AquaBlueBlack]

gurlwiththecurl - not wanting to make you feel guilty (I genuinely welcome the honesty) but that has just made me cry and put the fear of god into me. It is like it just slapped me in the face that maybe I am down playing this - telling myself it is only mild - he is not severe, and he isn't - now - but that is within the very supportive and closet framework we currently working within and I have the niggling doubts that it concerns me he is this young and people are suggesting it, I have seen 'differences' since he was 18mths. I don't think anything can worry a parent more than the thought their child struggling.

[NettleTea]

yes, my DD cant attend secondary school. she is doing only 3 GCSEs at adult evening courses at a local FE college, and is at home all day. With luck, and if the EHCP provides what it is offered, she will have someone to work alongside her to help her study. Then she will hopefully will receive funding to get the other 2 GCSEs she needs next year to get the minimum. LEA may fund because they recognise its their fault that she cant go to school, because of what happened, and because of the timescale.

With luck, and support in place, she can rejoin mainstream at year 12 for college. It will have taken 5 years to get her back to where she should academically be. in Year 6 she was one of the highest achievers at a tiny primary - she entered secondary in the top stream for every subject. She lasted 2/3rd of the first year, and 1 month of the second. 2 months in the 'specialist learning centre' with a woman who didnt believe it was anything more than my bad parenting, who threatened me and her, and said that if I took her privately she would get the diagnosis I paid for, and that was it for school.

Luckily, because of other healthcare complications, we had back up to prove I WASNT a shit parent, annd managed to get a GP referral to a specialist centre for PDA in Nottingham, funded by our local commissioning group, but this was after a private assessment which diagnosed ADD, and ASD.

If you have the support of the school for getting a diagnosis you really have it sewn up, as so often schools dont want to know

[NettleTea]

But positively my DD is a wonderful girl - she has a range of interests, she can talk expressively and enthusiastically to any adult she meets and charm the pants off them - she dances and competes, she makes videos and youtubes, and has a group of friends who she keeps in touch with and speaks or sees online or in real life. She may struggle when times are stressful, but she is getting good grades in her GCSE coursework, despite having not picked up a pencil in 2 years. And on Monday she took herself with a group of friends to a big town 40 miles away and came home, remembering not to spend all her money on makeup and having enough to buy dinner.

[Thornrose]

I'll just repeat what lots of other posters have already said. Absolutely go for it now, you literally have nothing to lose.

I want to do what I can to preserve that and help equip him with the right skills and support that is spot on.

My dd is another one who fell apart spectacularly at high school! it has had huge ramifications for her MH. She has had to transfer to a special school in Year 11!

Dd was "high functioning" up until Year 7. She became less and less able to "function" in the real world as time went by and people around her became less understanding/less willing to make allowances.

[QueenStreaky]

Someone upthread asked about access arrangements for exams. You can find out about what arrangements are possible and how to qualify for them on the Joint Council for Qualifications website //www.jcq.org.uk/exams-office/access-arrangements-and-special-consideration/regulations-and-guidance/access-arrangements-and-reasonable-adjustments-2015-2016.

It's worth noting that it's getting increasingly difficult to get access arrangements approved. The JCQ guidelines change every year and the move now is towards gathering a history of need, so it's worth starting early to collect evidence to support this.

You can't apply for the arrangements yourself, it has to go through the SENCo or exams officer at the child's school, but it doesn't hurt to know the guidelines so you can prompt the SENCo/EO to do their job. You may be lucky and have people who are really on the ball and efficient, but you may not - be aware they you will have the means to drive things forward.

[Thornrose]

Good point, at the school I work in we have scribes, readers, transcribers etc set up in advance of Year 6 SATS.

[FaithAscending]

Just adding another voice of support. I'm recently diagnosed with HFA at 34! It's a huge sense of relief to know why I am how I am. I pushed for my diagnosis so I know for myself. Also because I have issues at work (don't grow out of it!) and I thought that it would be useful to know and disclose to my boss to get additional support and eventually a different role.

Obviously it wasn't the sort of thing that was diagnosed when I was young. I don't have massive issues about not been diagnosed but if I had known, I would have struggled less I think. If it was my child, I would push for diagnosis.