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?

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

I'm afraid that raises the stakes. Your DS hit his little brother not for the usual brothers-fighting reasons but for reasons directly related to his autism. The autism is subtle but the behaviour isn't! And there's a real risk that it could happen at school as well. It might not but speaking as one who got caught out, I really wouldn't delay his assessment. Your DS needs it to identify his individual triggers and to inform the right prevention and management strategies for you and the school to use.

And in future you may be able to call on the experts who assessed your DS to confirm that he's not just being a random bully and he really does feel that desperately about who should be in the boat. And to advise the school and support them in getting resources for him, if need be. The diagnostic assessments are part of the process of building up the support team that your DS will need.

I know this must be a very scary thought but I do have at least a word of comfort: my DS was much more aggressive than your DS and he did lash out in school (count my grey hairs!) but the diagnosis brought him the help and understanding he needed to stay in school and over the years (with support and maturity) he has gained massively in self control and quite a lot in flexibility too. When he was primary age I had a permanent nagging anxiety about his aggression but now he is teenage I really can be confident that he and the others around him are all safe.

I am a bit late to this thread but wanted to add my bit. Aqua you have been given lots of good advice on here. I think you absolutely should seek diagnosis and i don't understand why anyone would not. My DS is now 8, he was diagnosed aged 3 and has HFA dx. Getting his dx was upsetting for us even though we knew it was coming. My DS is a delightful happy little soul and we adore him but life is hard with his ASD and he can be extremely challenging. His dx gave him the support he needed in primary school, in Yr 2 of mainstream he moved to an ASD unit. I have known the same happen to others too, as children get older and the games and rules become more sophisticated lots of ASD get left behind socially. also they can be distracted and disruptive in the class as they dont understand some of the rules or struggle to follow them. Without a dx your DS could be labelled naughty and a pain.

Also when our DS was in Yr1/yr2 he started to notice he was a bit different to others and came home saying 'i'm weird aren't i?' Which broke my heart. Getting a dx helped us and him to understand he has ASD, he is not weird.
Your DS will probably also notice some differences as he gets older and the dx would help you and him to discuss problems.

If he does have ASD he will have it for life, but he is still your little boy. You do not know what you will have to deal with and what battles you may face with schools.
I work in a secondary school and have seen children without a dx obviously struggling and not always getting the support they need.
No one should ever think of it as 'labelling', it is a means to hopefully opening doors to support. Without it the struggles are still there but some of those doors for support dont open for you, if that makes sense.

I'm afraid that raises the stakes. Your DS hit his little brother not for the usual brothers-fighting reasons but for reasons directly related to his autism. The autism is subtle but the behaviour isn't! And there's a real risk that it could happen at school as well.

This has happened at school, one of the reasons they wish to pursue the diagnosis , they said he certainly wasn't more aggressive than other children, quite the opposite often but their concern came from the reasoning behind his action rather than the action itself. And yes I am scared what this means for him, for us, for his future happiness.

You have all successfully convinced me to pursue diagnosis please don't worry about that - more importantly you have opened my eyes up to the wider potentially longer term issues/ barriers that I need to be thinking about

I think this has been a great discussion.

I have started the ball rolling today re DD (8) with a GP appt to push for a referral. Currently she is in yr3 and coping on the whole pretty well but she is finding yr3 a hell of a lot harder than KS1.

AquaBlueBlack - we are on the same path and the description of the toy boat incident could be a description of our house most days. I always suspected DS1 (7) had 'quirks' and i long suspected HFA. We saw a pediatrician last month and have a referral for a full assessment.

Just want you to know you're not alone. If you need to chat it though feel free to PM me.

You're right biscuits. Aspergers is not listed as a condition in ICD10, its ASD

Interestingly I was only diagnosed last month and my assessor said in conclusion that based on my assessment she believed I have HFA, specifically Asperger's. She told me that even though it's no longer listed as such, she felt it fitted me really well!

I work with SEN in schools and think you have already been given loads of good advice, and I would recommend diagnosis! It can help, even if DC is fine at the moment there may be times in their life that they do need the extra support. Certain routes of support may only be opened once a diagnosis has been made.

Also the term Asperger's isn't officially used as much any more, however:
'In DSM-5, the terms ‘autistic disorder’, ‘Asperger disorder’, ‘childhood disintegrative disorder’ and ‘PDD-NOS’ have been replaced by the collective term 'autism spectrum disorder'. For many people, the term ‘Asperger syndrome’ is part of their day-to-day vocabulary and their identity, so we understand concerns around the removal of Asperger syndrome as a distinct category from the manual. All individuals who currently have a diagnosis on the autism spectrum, including those with Asperger syndrome, will retain their diagnosis. No one will ‘lose’ their diagnosis because of the changes in DSM-5. '

From: www.autism.org.uk/about/diagnosis/criteria-changes.aspx

I think we have to be careful as these terms become a vital way for people to understand themselves, even if the 'official' language changes over time.

P.s Certain things (like DSM-5) act as a guide, meaning so some still use the term Aspergers and some will not. All depends on what influences their frameworks.

'DSM-5 includes some changes which could affect the way diagnoses will be given to people on the autism spectrum. However, it's important to add that although DSM is influential, the main set of criteria used in the UK is the World Health Organisation’s International Classification of Diseases (ICD).'

It's only listed for research, not diagnostic purposes but I think lots of people still relate to the term aspergers.

I actually cannot believe that what I thought was a helpful comment near the start of the thread has been taken as some sort of insult. I give up sometimes on here.

World Heath Organisation says: 'ASD is an umbrella term covering conditions such as childhood autism, atypical autism and Asperger syndrome.'

However, from my experience working with ASD, the term is rarely used for diagnosis.

But some do still use it, it's about professional preference.

(just to note, my department don't use the term Aspergers any more)

My diagnosis was about 18 months ago, and the Psychiatrist who diagnosed me basically said that I have what they would call Asperger's, but that they (presumably as in my local NHS boards and his private hospital as he was he head of autism at both) didn't really diagnose it as a distinct condition anymore, so my official diagnosis is high functioning autistic spectrum disorder. That said, I generally tell people I have Asperger's as I find that the image that people have of Asperger's is more like me than the one they have of "Autism". Not great, but I find it easier.

I think some doctors, from what mine said, quite liked the removal as taking away the distinction made diagnosis easier as there were some people who fell through the gap between ASD and Asperger's previous and ended up with PDD-NOS (i think!) which is really not well understood as it's not a defined condition IYSWIM?

I have a suspicion my dd (5) is also on the spectrum - but like me a that age I don't think she would currently be diagnosed. Since she's started school (which she likes) her behaviour has just gone downhill so much. But I think a lot of it is her mimicking the behaviour she sees from other children (she does mimic phrases etc a lot and always has) and then not understanding why she gets told off for it. But I have a feeling she's going to have to get worse before anyone else will see it - even DH doesn't really think it's anything other than her being a little git :)

*apart from people who have/use the term themselves! I was talking about new diagnosis with children mainly.

It's a mine field tbh

Statistically

Yes, I have a friend who defines herself as having Aspergers and I don't think she ever identified with the term 'Autism'

I think that's why a lot of people were against the removal of it - there's definitely a group where Asperger's matches their identity more closely. I think that's probably true for me to an extent, I work (as above) in quite a classically "geeky" role, I'm good with numbers whilst not being in rainman territory , I have a fairly high IQ...so the image many people have of Asperger's feels closer to me than the one people seem to have of Autism where they seem to think more classic autism. Apart from the fact I'm female of course!

I'll also admit that whilst I've not found disclosing Asperger's to the employer I had then and to a new employer to be particularly harmful, I don't know if that would have been the same had I said Autism. But I suspect that will change rapidly as Asperger's is phased out - perils of being at the front of that change!

aqua It sounds as if your DS happy now and you and the school are all doing a great job. So he has every chance of a happy and successful future I think sometimes diagnosis is harder on us parents than on our kids, we’re the ones who worry!

@hoopyloopycow
I was gutted to read your post, and I'm with you...our DD (13) has just been discharged from a mental health unit for similar reasons. We've always know she's different/unique; didn't see any reason for a label. How wrong we were! She's having an autism diagnostics test in a few weeks' time now she's no longer an in-patient; we know what the results will indicate but hope the 'label' will afford her support in the future and help her live a happy adult life.
Much love to you. It's tough but you'll get stronger every day 💕
New to this Mumsnet malarkey so hi everyone; hoping to pick up some tips & maybe share some of my own..?

Hi Loulou and welcome to mumsnet. Glad to hear that your dd is now on track for getting the support she needs.

Just to mention as a lot of new mumsnetters don't realise this - this particular online forum tends to prefer people to start a new thread rather than finding an old one to add to - I guess you found this thread from a Google or other kind of search and it's great that it's been helpful to you, but now it's in "active conversations" people will read the first post and not notice that it's a conversation that petered out ages ago. That's why there are "zombie thread warning" notices.

Not to worry though. You are as I said very welcome. Chill out, have a and start exploring.

Some really useful and insightful posts on this thread. Thank you everyone.

My 11 year old ds was diagnosed with Aspergers (that's what's on the CAMHS paperwork) 5 years ago. I personally now use the term 'High Functioning Autism'.

He's quite severely impaired in relation to social communication (he scored highly for impairment on this section of the ADOS) but because he presents atypically, I often hear people saying 'he's only 'mildly' autistic'. He has a great sense of humour, engages in conversation with people and at his previous school was well liked and described by his teacher as 'charismatic'.

However, like many other dc's with HFA described here, he's constitutionally unable to see other people's POV. This means he feels picked on when he's told off for inappropriate behaviour and comments. And he won't hold back if he thinks someone's getting at him. If someone tells him off, as he sees unjustly, he'll argue with them until the tongue falls out of his mouth. He hasn't sworn at a teacher yet, but he swears like a trooper at home and in the playground if he's antagonised. If another child threatens him or insults him, he'll threaten and insult them back - he has a very sharp tongue, a quick temper and is massive for his age. Not a good combination. The only good side of it is that he wasn't bullied at his primary school (which was a big, tough inner city primary), mainly because other children found him physically and verbally intimidating.

He's had a horrible transition to secondary. Last week he cried and shouted every morning, pleading not to go in. He got his first detention on Friday for arguing with his tutor. When his tutor phoned up to complain about his behaviour it transpired he hadn't read any of the SENCO's information about DS and wasn't aware that he has SN. I suspect that none of his teachers realise. It's shaken my confidence in the school that such a fundamental fuck up could happen early on - that a child who is actually quite severely impaired and has needed lots of support at primary could have his SN go completely unacknowledged on starting secondary, despite visits last term from the primary SENCO and all the paperwork being forwarded.

:-(

Sorry Loulou - I didn't meant to hijack the thread.

I would chime in with pretty much everyone else here that a diagnosis is actually very useful when HFA is suspected.