to not pursue asd diagnosis for 12 yr old?

[cabsarehere]

Hi,

I'm posting here rather than the sen boards for a wider variety of opinions.

My 12 yr old DS is currently on the waiting list for an asd assessment. We have been waiting since oct/nov so I think we still have a good few more months of waiting yet.

I am really torn as to whether pursuing this is in my son's best interest. I am concerned that the assessment process will be stressful and make him feel like there is something wrong with him and that if he did go on to be diagnosed that he wouldn't take it well at all and it could actually make things worse.

He is coping relatively well at the moment. He is prone to outbursts of anger, these have been occuring maybe twice a month since starting high school in sept. Only at home not at school.

At primary he did have angry outbursts at school but only about once every 5-6 months his behaviour at home was mostly ok during this time.

His schools have never mentioned asd as a possibility it has all come from me, I suffer with anxiety and worry that I have just read too much about asd (on munsnet mostly) and have convinced myself there is a bigger problem than what there is.

He is at such a sensitive age and his self esteem is so fragile.

I also wonder what support is actually available, he would be at the much higher functioning end of the spectrum and I'm not sure what could be offered that would be helpful.

I myself fit a lot of the criteria for asd, I think that if I had been told at age 12/13 that I had asd I wouldn't have pushed myself to do things that I have.

This is just going round and round in my head, I am driving myself crazy!

Any opinions/advice would be much appreciated.

As a parent of ds14 who was diagnosed with ASD at 8yrs I can reassure you that the assessment process itself isn't stressful.

Can I also reassure you that an ASD diagnosis needn't be a diagnosis to lifelong disaster. Your ds is doing ok at school at the moment, and all going well, will continue to do so. He may well not need a diagnosis to 'explain' his differences, or he might.

Don't say no to an assessment OP if your ds is listed and when the time comes for it to start (it's lots of assessments) if it doesn't feel right, cancel.

Re: coping with an ASD diagnosis as a preteen - well, it wouldn't come out of the blue, or would it? do you, at the moment, ever talk about his temper, where it comes from etc? Do you ever talk In general about how some people are better at some things than others? I'm thinking there are (fiction) films you could watch as part of a 'aren't people strange and different?' kind of conversation. Or biopics, like Temple Grandin's, or The Imitation Game, or Turner's life (though I've not watched the latter).
I might be talking rubbish!

We do talk about his temper and I have mentioned that we might need to get a bit of help with it.

I have kept an episode of the undateables recorded that I watched a few weeks ago. It has 2 young men with aspergers on there but they are so different from eachother one was a big strapping rugby player who also had tics and just seemed uncomfortable in himself and a bit awkward the other seemed more obviously autistic to me although he seemed more confident and happy in himself, he was very clever and at uni. I considered showing it to DS to show that even with a diagnosis everyone is unique and different.

Does he not struggle socially, or notice and say that he is not quite like the others?

I have noticed in the last year or so that he has struggled a bit socially. He just seems to be a bit less mature and gets stroppy when banter goes a bit far.

He does have friends and chats with them online while on the xbox but there is a fair amount of bickering.

He hasn't said he feels different but has said that his anger isn't like everyone else's and that he can't control it.

The anger usually happens when he is frustrated, the majority of meltdowns happen over xbox games

'Undateables' might not be overly inspirational , however!
You could present the assessment as him being tested to see where his strengths are, and how he can use them for the best, and pinpoint any area where there's help available for any difficulty? (Since you sound worried about his response to being assessed).
It sounds like it would give you peace of mind, so I'd say go for it.

I have a 10 year old son who has always had quirks, always been a little left-of-centre, but a happy, healthy boy. As he's growing up, he's presenting more challenges and I remain convinced we did the right thing in requesting formal ASD testing from CAMHs because as he gets older, he's statistically more likely to require more support.

A few months ago he tried to harm himself (often talking about how stupid or worthless he was in the run-up). More recently he tried again, but in a much more serious way. Having an official statement means we are better equipped to help and support him. School have asked who we'd like to share the information with about his diagnosis and needs, we've told them it should be a need-to-know basis rather than announcing it to everyone. We operate the same way; we don't announce him being on the spectrum unless someone needs to know. I have no idea if he knows; I would doubt it though, because he's -most of the time- an average 10 year old who loves riding his bike and playing rugby.

Labelling a child is only a detrimental thing if it becomes an excuse or a get-out. There are certain things I won't tolerate regardless of the spectrum; bad manners and rudeness aren't ok just because he has Aspergers; he just has to work slightly harder to remember the politeness. Ditto working hard at school. I look at it that I have to equip him to live a happy adult life within society's parameters, so we talk a great deal about emotions, feelings, rights and wrongs and how to handle situations. We praise him for things he's worked hard at and make him re-do things he's rushed or not put effort into. He is part of a couple of team sports and loves the friendship and social sides. He has consistently limited computer/screen time (I hate that phrase) because he would spend hours on the xbox given chance and the rules are inflexible; if he thinks you'll bend them once you'll be expected to do so every time. Life can be challenging with him but I know for absolutely certain that life would be far more difficult without the support and interventions provided by outside agencies. Take all the help and support offered to you.

timetomuskup thats interesting that your ds is unaware, do you plan on telling your ds about his diagnosis?

mountains I know the undateables doesn't sound like the best programme, but putting the title aside it really does show things like asd in a different light.

I think you are wise to keep going with the assessment. After all it wasn’t just you, your GP must have also thought it was worth making the referral and that you weren’t just fretting over nothing. It is good news that your DS has settled well in to high school but it still sounds as if he does have some difficulties and maybe life could be made easier for him. It is stressful now but afterwards you and your DS will have a much clearer idea of what issues he has or doesn’t have; if it turns out he does have dyspraxia (etc) then there may well be help and if not, well that’s reassuring for both of you.

My DS has an ASC, he’s 17 and is definitely enjoying life in despite ups and downs. He was diagnosed early in primary school, had difficult behaviour but he was very outgoing and sociable at primary school, went through a withdrawn patch after he started secondary and started to find friends and have a social life again when he was about 15. He’s quite self-aware and he commented that the introduction to his personal statement on his UCAS form might as well say “I have Asperger’s” but it’s still a beautiful explanation of his attitude to learning, it is very “him” and it certainly hasn’t put anyone off – he has offers coming out of his ears! Students have the choice of whether to tell a university about a disability or not but of course if they don’t tell anyone then they can't adjustments or support etc. The easiest thing is simply to put it on the UCAS form in the appropriate place and let things take their course.

I work in a uni department in a subject that tends to attract students with, um, interesting cognitive processes Mostly the students with diagnoses (ASCs, dyslexia, dyspraxia, ADD, whatever!) tend to get along pretty well; they can get support and advice from student disability services, and they are self-aware and often quite good at self-managing. They have profiles which with their agreement are shared with teaching staff so we know what adjustments to make; if they do struggle there are resources and processes we can call on. But the students who struggle the hardest are the ones who have problems which should have been diagnosed ages ago but they've got through school without and now they have no awareness of why they’re suddenly not coping with the new environment and the social and academic demands of university and independent living. They can get isolated and depressed and find it hard to manage the work. We need objective evidence – like a diagnosis! – so we can give them extra resources and make the right adjustments. Much better if that’s already in place and the poor student isn’t trying to get a diagnosis (and come to terms with it) from a standing start. (Bit of a side issue as your DS is still quite young but anyway!)

I work in a secondary school as support staff and have a lot of contact with pupils with ASD. Every year we see an increase in year 7 pupils with behavioural difficulties, which appear to be getting more severe, most probably due to ASD but the important thing to note is that not all of them have a diagnosis. I cannot fathom for one minute why any parent would not pursue one. All I'd say is, knowing what I know now, how the system works of assessment and funding, particularly in secondary schools, that If I had any children of my own that I was concerned about, then I'd push for an assessment ASAP.

The whole process takes a long time, and if a diagnosis is in place before secondary age then it will make the transition to secondary school so much easier. As others have mentioned, where a pupil with ASD might just be able to cope in primary with a TA in the class, they will find secondary a very different set-up and this is where problems can set in, particularly if they have done ok in year 6 SATS and so placed in a high set at secondary. Higher sets generally don't have their own TA. If your child needs a TA in class then school will struggle to find the funds to provide this UNLESS THERE IS A DIAGNOSIS in place.

A secondary school may request an assessment if a year 7 pupil is struggling but it takes a long time and by then things like attendance or academic grades may start to be affected.

I urge any parent to push for an ASD assessment BEFORE secondary school, and think extremely carefully about the right secondary for your particular child. In particular when looking round schools, get a definitive answer from them about whether a TA will be present in the class all the time, and how many pupils with extra needs will that TA be supporting. So many parents seem to just assume that because there was a TA available to their child in primary that they will have the same set-up in secondary. Unfortunately it doesn't work like that. Unless the child has an EHCP which specifically states that they require a one-to-one TA, there is not a requirement for the school to supply one for them, and it's just then a matter of luck as to whether a TA will be available in the class to provide general help. (These tend to be in the bottom sets, as I've said - top sets won't see a TA unless they are "attached" to a specific pupil as part of their EHCP)

My son has dyspraxia as well as asperger's. He does need more input from me than most 12 year olds but he should be able to lead a fulfilling life. In his case university, job, possibly living alone, relationship and family, should he wish. It's just a matter of getting through that evil puberty with the added complication.
I think it's really worrying you so I would pursue observations and assessment for now. That doesn't mean only assessing for one thing - they can look at several issues at one go.
Can you afford a private educational psychologist? That can speed things up, and give the school a chance to refer more quickly. It costs about £500-650 depending on where you live.

I speak as the mother of a child who sounds very much like yours, who is now 19. He is diagnosed ASD and ADHD, and I can tell you now that problems like anger and anxiety tend to escalate with puberty. For that reason alone I would say go for the assessment. If he doesn't have ASD they they won't diagnose. They hopefully will also look at other possibilities too, like ADHD, which sounds like it could be a possibility too.

I don't get the stigma thing people go on about. It's precisely because of that attitude that there is a stigma! There could be a stigma anyway. I decided when my son was 4 and I was wrestling with the same worry you are now, that if my son wasn't labelled autistic, he'd be labelled naughty or angry, or awkward. Which is worse? If he was having problems seeing, you wouldn't not see a doctor because you didn't want him to be blind. If he's having difficulties, then it's worth looking at if there is a reason that can be helped.

For my son, learning about his autism was a relief. He knew that there was something different, that he was struggling and started asking us why he had problems with anger and was finding life difficult. etc. He was miserable. Learning his diagnosis helped him to understand why he was having difficulties and took away some of the anxiety about why he was struggling. It is also a way of accessing help. There is precious little help out there without a fight and without a diagnosis it's even harder. If you ignore it now you could end up with a situation where he is out of school and unable to access help because he doesn't have a diagnosis. Believe me, I know a fair few parents who are in this position with their children.

If he gets a diagnosis - and he might not - he doesn't have to share his diagnosis with his peers - that's up to him - but it could enable him to be better supported and understood in school. It is not a defect, it is different wiring in the brain that makes him find some things more difficult. It also may give him different and unique insights on the world. It is hard, but I'd hang on in there if you can. The teenage years are hard, especially if he does have ASD/ADHD, and you need all the help you can get. There's nothing to lose.

And just to add, purely from observing the pupils at the school where I work, the ones who are diagnosed and aware of their limitations and also their unique attributes, tend to be happier than the ones who are floundering and who KNOW they are different and floundering. They tend to talk about their condition with staff and friends, and friends are generally more accepting if there is openness and awareness about ASD in the school generally. I remember one poor boy whose parents didn't want him to know that he had ASD. He didn't have any friends because he would unwittingly upset them by his abrasive manner and then be gutted that he had upset someone by mistake and so then just started avoiding other pupils altogether. Of course we as staff were aware of his condition and so understood his little idiosyncrasies and accepted them as being part of him and gently explain the right way to speak to someone if he got himself into bother with another pupil. But we were never allowed to tell him WHY he behaved like that, which I think would have helped with self-acceptance and self-confidence. Sad that in the end his only real friends were staff who understood his condition.

We definitely can't afford to go private.

I think there are 7-8 classes and ds is pretty much in the middle class. He got average SAT's, maths was just below average. He isn't very academic and will usually do the bare minimum of work that he can get away with.

He has never had much TA input, not even at primary.

The school he attends is considered quite disadvantaged and is in special measures at the moment. Oddly this actually seems that they are actually much better at dealing with less straight forward pupils.

cabsarehere I honestly haven't given it much thought. I tend to go down the route of waiting til he asks questions then answering truthfully, so I suppose when he asks, we'll sit down and go through it together.

I suppose the underlying reason for not having told him so far is his sensitivity to certain things. I was adopted as a child and answered him truthfully when he asked if I'd come from Grandma's tummy during a chat about where babies come from, explaining that I'd had a birth Mum who couldn't look after me and then went to live with Grandma and Grandad. For months and months afterwards he struggled with the whole concept and, even now, gets upset when he watches stuff related to it; even an innocuous Disney film (Meet the Robinsons) tipped him over the edge a few months ago. The fact that he struggles to process and understand certain things makes me not offer everything up to him until he begins asking questions. It's almost as though he asks the questions once he's emotionally ready for the answers. Until that point offering up more information is liable to overload him.

For those of you that work in schools, if your school suspect asd in an undiagnosed child, is this raised with the parents?

My DS looked up Asperger's on Wikipedia and didn't agree with all of it He also knows a lot of other kids with HFA/Asperger's diagnoses as a result of going to a social skills group. They've discussed it with each other. By the time they get to 12-ish it's not only about what we choose to tell them, they have their own sources of information and their own opinions.

I'm afraid it could be pretty tactless and off-putting to show your poor DS Undateables. It's fine that the show means something positive to you but your DS is very unlikely to feel the same way as you do about it, it would be quite a shock and a knock for most 12 year olds to think their mother is comparing them with characters from that show.

There is no harm in just letting things be what they are and letting your DS figure things out for himself, you wont necessarily have to spell it all out to him. You can let him take the lead in talking about it, or not.

It might be worth thinking a few years ahead to GCSE exam time. My 18 yr old DS has Asperger's and Dyspraxia, diagnosed when quite young, and not statemented. School always met his needs, as best they could, but he did get extra time in his exams due to his difficulties. He has low muscle tone and finds writing very tiring, and he needs slightly longer to process his thoughts and get them down on paper.
He had the extra time because he had a diagnosis. Fingers crossed if he gets his A level grades, he's off to Uni in September. Again, he'll have extra time in his A levels.

OP I have an 11yo DS with Aspergers and ADHD (the inattentive variety i.e. attention deficit disorder without the hyperactive bit). He was DXed with Aspergers shortly before his 5th birthday, and with ADHD at 10.

Tbh we really struggled with the ASD DX in the early years - school had pushed for it, not us - and found it very hard to accept. We actually expected to get a dyspraxia DX because DS had major difficulties with motor skills (assessed at below 1st %ile) at the time. The paediatrician went through it all with us and pointed out that we didn't have to accept 'the label', that DS was very borderline and might not have been DXed by another paed, that if we really felt there would be no benefit to it we could ask to have the DX removed. However, none of us could predict what would happen in future, or whether our boy might experience greater difficulties as he grew older, so we had to weigh that up too.

We opted for DX and I am so glad with hindsight that we did. Even though we could easily have gone down the 'he's fine and doesn't need a DX' route. DS is very high functioning: self help and organisational skills are age appropriate, he is socially gawky but an effective communicator as far as he needs to be, is comfortably above average academically without being exceptionally able (high level 2s in the Y2 SATS, level 5s in the Y6 ones), never needed 1-1, attended social skills group on weekly basis but no other formal support and he went through the whole of primary quite happily. By the end of Y6 he'd also acquired a really good, solid friendship group of like-minded mates, some are just nice quirky boys and some also have a DX of some sort. He has transitioned to secondary very well, is making good academically and is happy.

But.

The DX is a key thing in helping him understand himself, if that makes sense. He might not need any formal support at school, but it really helps us manage and parent him at home. DS struggles with negative thoughts and can be exceptionally hard on himself, and has the usual pre-teen flashes of anger, exacerbated by the challenges of being on the spectrum, which could very easily head down a viciously self-destructive route if they were not carefully handled. I am acutely aware that many DC on the spectrum can really struggle with their mental health in the teenage years (and beyond). At the moment, it really helps him to understand that the things he finds challenging are not his 'fault', if that makes sense. To understand that there are loads of people who share the challenges he faces.

I am very aware that his life is only going to become a lot more difficult, both socially and academically, as he goes through secondary school, and let's face it a DX can only do so much. But it is the currency that will buy him, to an extent, a degree of support and understanding from teachers and peers, and that can only be a good thing.

I wish you and your DS good luck.

It was just that particular episode of the undateables that struck a chord with me because one lad on there was the closest resemblance to how ds presents that I have seen. He is not the stereotypical big bang Sheldon, eccentric genius type of aspergers that is so often shown in the media. I appreciate that the title of the program is a bit crap, but the actual program was fine not so different from that program linked to up thread.

I'm not going to take his name off the waiting list. When the time comes I will discuss all my concerns with the paed and find out what kind of help and support is available.

Dd is 10 and self diagnosed with ASD about a year ago. Formal assessment will be in 2 days after a nearly 2 year quest, starting with possible dyspraxia then veering toward sensory processing disorder and from there towards ASD. She can't wait to receive her official diagnosis, and to move to a secondary school with proper support and understanding of the condition and hopefully meet other kids with ASD. Having a diagnosis in place seems crucial to us, even if she is high functioning and in top set because she would be allowed to retreat to a calm place when overwhelmed which can happen for a yes or no at the moment. Understanding herself has helped tremendously with her self esteem and helps with her anxiety too.

My ds enjoyed his assessment for ASD (which he has). It's not stressful (for him anyway). The CAMHS team were lovely to him and he found the process interesting.

I'm glad we know he has ASD. It helps us and him understand him better. It most definitely doesn't lower my expectations of him.

Meant to say, my ds is high functioning too like many dc's on this thread. He plays the trumpet well, and is in extension groups for grammar and maths. Socially he's surprisingly ok. He has three good friends and gets on with most of the kids in his class.