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?

[Biscuitsinbed]

I agree so much Nettle, I was so shocked when dd2 was described as 'severely autistic'. I couldn't marry the two up for a long time.
I also agree that secondary school has made everything fall apart- very badly.

[StatisticallyChallenged]

As someone who was diagnosed as an adult in my mid 20s I would say go for it.

I think some of my traits became more obvious as I got older and social interactions became more complicated and nuanced. So I'm not sure how obvious it would have been at, say, 5. By 10 I was the stupidly bright kid reading random library books about the Romanovs and using tutor kings and Queens for "20 questions". High school I was the smelly kid who tried so hard to fit in, was academically fine but somehow just couldn't get the other stuff right. As an adult I find it incredibly difficult to make friends and can struggle with the noise of a busy office and the ambiguity and undertones of work life

Diagnosis probably saved my career as my boss was on the verge of managing me out the door until I was diagnosed and she did some research and suddenly got me.

[hiddenhome2]

Research has shown that people who are classified as 'high functioning' are more likely to experience serious mental health problems as they go through life.

They're the ones who most need the care, but are least likely to receive it.

[notagiraffe]

My son had a late HFA diagnosis (age 12.) It has made a massive and positive difference in his life. I'd go for it. People are infinitely more tolerant and supportive of HFA behaviour with a diagnosis than without.

[Anomaly]

notagiraffe we found that just by going to get DS considered for an assessment made the school actually take his issues seriously. I could tell his teacher had done some research into strategies to support him and the local autism team have been involved even without a diagnosis. I think because health professionals had confirmed some of our concerns were actually genuine. Up until then I think they thought our child was not very clever and we just needed to get over it.

[IsItMeOr]

I thought high-functioning primarily related to language development, rather than academic ability?

I would go for a diagnosis for all the reasons given. DS struggled so much as soon as he started school that we didn't feel we had any choice but to try and find out why.

Since DS was diagnosed, I've been wondering about whether the traits I have mean that I would be on the spectrum too. Not sure about pursuing that for myself yet - but it could make sense of my anxiety problems...

[Youarentkiddingme]

Excellent post nettle
My DS is cognitively very able but has lower than average verbal reasoning skills. This means he has learning difficulties in a way the knowledge and ability to learn is hindered by his inability to communicate. His current shitty crappy school who claim to have expertise in ASD say he's mild. Refute he is complex despite previous descriptions of this and describe his autism as 'mild' as they have 'worse children'.
The thing is my DS is extremely inflexible in his thinking. It's very hard to advise and support him over an perceived injustice because he just cannot /will not consider another viewpoint. This also means that because sometimes classrooms are moved around and seating is re jogged he explains it as 'they always change everything'. They don't. But his anxiety means for him it feels continously because he's continually anxious about it.
Then there is the 'masking'. What can you do when people think it's normal for children to mask and meltdown later because they are high functioning so have learnt to mask for social reasons? It's hard to challenge this viewpoint and get people to understand that the masking means something in their environment isn't right for them and the right reasonable adjustments haven't been made. Not being violent and smashing up a classroom does not mean a milder form of autism.

I really would persue an assessment. For your DS. It will help him understand himself more and understand why small things that many people wouldn't notice can have a large affect on him. Likewise the things that with autism may not be of any concern for you (social politics!) can cause discomfort and a change in group dynamics.

Also I totally agree the change from primary to secondary can have a massive affect on some children. It's set my DS back a good number of years. But I also know for some children it's been a big step forward. The diagnosis will help for the school to put things in place to hopefully ensure those steps forward.

[AquaBlueBlack]

Thank you all, seems to be some really excellent advice. It has given me so much to think about and reflect on. I'm reading so much different advice and views of what constitutes hfa, some really marries up to ds some doesn't. Youarentkiidingme, your description rings particularly true for my ds, especially about his inability to understand others views. It is like he can on a surface learnt level, but it isn't an empathetic or deep rooted response.

[sashadasher]

I have an older daughter and younger son both with ASD.My elder daughter wasn't diagnosed as promptly as my son regrettably, her life as she explains it to me would of made more sense earlier and she would have found senior school much easier as would of had support that my younger son gets.As she's an adult she explains knowing why she acts like she does in social situations helps her, she says it's best thing I ever did for her(she explains it much better)So I suggest you go for it.you may hit a few snags but very much worth it for your child.

[hoopyloopycow]

Youarentkiddingme brilliant post, so much of that rings true for my dd.
Will also second what others have said about the transition to secondary.
Primary is a totally different and much more manageable environment. Social and emotional expectations become much more in depth and complex at secondary age and this definitely triggered a whole new level of anxiety for my dd.

[NettleTea]

Many people cannot accept that my daughter has autism. But they only see the good side, they only see her as highly sociable, charming, engaging, intelligent. They dont see the other side at all - the refusal to wear clothes because they feel wrong, sitting under a table growling, smashing her hands to her face and pulling out her hair, taking 3 hours to do something that takes 15 mins because she cant/wont remember the steps and needs reminding every 2 mins to keep on course, and then 'refuses' because of the anxiety (she has PDA as well as Aspergers - straddles the two depending upon her levels of anxiety)

when she is 'out' she is fine, if she isnt feeling fine she wont venture out at all. Its very hard when you see all the negative behaviour at home. Even school barely saw it because she just refused to go once it hit breaking point.

[Goadyflattery]

Nettle my dd pulls out her hair too, it's awful isn't it?

[NettleTea]

Its very distressing isnt it.

this morning we were supposed to go to a vintage Fair. I havent dared say it was a vintage fair because it has taken over 3 hours and she has not had breakfast yet, and there will be all hell break loose if she thinks she has misssed something she would have liked because it has taken her so long to get ready.
My son has been jumping non stop for about an hour now. He got himself dressed. He chose his own clothes, has his teeshirt on back to front, and looks like he has dressed for the beach. He cant see why the clothes may be inappropriate.

[Goadyflattery]

I had a classic meeting with school last Thursday, the headteacher said 'I can't give her friends' and 'she looks fine walking around school, I think that you think she is sobbing in a corner somewhere'.

[Figamol]

In an ideal world we wouldn't use labels and kids would just get the help they need based on their symptoms, or at least until a diagnosis is confirmed. As it is you need the diagnosis to get this help. Don't fight it, I did for a while, but in the end it is a means to getting him help. And for you and his teachers to understand him better. Its tough and scary but you'll feel good about it in the end, even if it takes time.

[Meeep]

We have a diagnosis but not an Ehcp, it's not needed right now. But if things change, I assume the diagnosis will help to get an Ehcp, or other help, sooner.
I think if school have mentioned it, it would be a good idea to start the process now - it could take years.

[NettleTea]

My son also has the 'no friends' thing - well he has friends and people like him, but they dont want to PLAY with him, because of the sort of acting out imaginary games that he wants to play, and because he gets so very upset if people break rules or want to take over the game (in his words, but probably meaning that they want some input too)

even online, where his social skills are a bit better, he often isnt asked to join in because, as our wonderful therapist explained to us, its too much hard work for not enough reward for the NT children to involve him alot of time. They just want to have fun, and you cant tell when it will change from fun to having someone having a meltdown because some rule has been broken.

[BarbarianMum]

My BiL was diagnosed in his 40s. Not because it changed his interactions with the world, or made certain things easier but because it explained why (in his words) why most people were so difficult, irrational and illogical. I think it also made him feel less alone.

It also helped explain why certain things - sudden changes of plan etc were so very, very difficult for him.

A diagnosis alone won't suddenly make everything better but that doesn't mean it's not useful generally. It's also essential in accessing support in education, including higher education and in giving protection in the workplace.

[ILoveACornishPasty]

I'll go against the grain here OP. We are in the same-exact same-situation with out youngest child. He functions very well academically and loves maths, ICT. Etc-he had a Raspberry Pi for his birthday and what he has already done with it (in a week) is crazy! He struggles socially and finds interaction hard but has been so incredibly well supported by school and by us. We asked the ed psych to informally monitor him and she helped us to ensure strategies were in place in school but much of this was what we were already doing and know he responds to. I know that if he were diagnosed it would say hfa, but he's happy, has friends, perfumes very well academically and we support him through change which is his major trigger for stress. We don't feel we want the official diagnosis if his condition (we just call it his personality) isn't causing him unnecessary trauma. Do what you think is right.

[BarbarianMum]

But Ilove without a diagnosis, how is he going to access support later in education?

[ILoveACornishPasty]

I should point out he does not perfume academically!! He is also in year 8 and the school, with the help of his primary school, managed the transition with him brilliantly. He still has his moments but is enjoying life, learning to genuinely empathise with others and to interact socially. He still finds these things less natural than others but manages them well. Very proud of him.

[ILoveACornishPasty]

Sorry Barbarian I didn't see that before I wrote again. Maybe we are very lucky but we have always been well supported. Perhaps there is a bridge that we will come to at some point when we're not but we have encountered nothing other than support. They've always called it 'pastoral support' as opposed to SEN support but appears to amount to the same thing.