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.

cabsarehere

My son was diagnosed with AS at the age of ten. He would be the first to tell you that it isn't 'something wrong' - it's a different type of brain.

The assessment isn't necessarily stressful - he was observed and assessed over about a year as we worked towards figuring it out. Once it was clear there was 'something' we started talking to him about understanding how his brain worked, so he got the support he needed.

I think it's perfectly possible for a 12 year old to understand autism. If he is autistic, he'll already know a lot, it just won't have a name! My son was really relieved by his diagnosis. It gave him an identity and validation.

In my son's case the diagnosis has been invaluable in terms of support and understanding from his primary and secondary schools.

I would go ahead with it all. Try to see it as something which could help you and your son work things out, rather than a problem. But I understand the anxiety - mine and my son's disappeared in a puff as he smiled when he got his dx.

My ds is 12 next month and has been on waiting list for nearly 2 years. At the moment he is the happiest I've seen him, but I am still pursuing diagnosis as it could all change. I want to understand him and I want to be able to talk to people and get support which at the moment is zero.

Schools do not always pick up aspergers as some kids like my ds don't have issues at school, just at home where they feel relaxed.

You have to do what you feel is right and what your instincts tell you

I second what ouryve says ds and dd have diagnoses given when they were small. They have been a protection for them. Without the diagnosis I doubt whether ds would have been in school because of his behaviour at times. Without dd's she wouldn't have had the adjustments made in school that she has, some teachers wouldn't have been as understanding about her neither looking at or speaking to them when she does quite happily with others.
A diagnosis isn't a label it's more a signpost,it points you in the right direction for getting support and understanding for your child without a diagnosis your child may well be labelled rude/challenging/ badly behaved/aggressive etc which to my mind are far worse.

ASD can cause difficulties with organisation skills and concentration skills. Schools that know a student has ASD may offer them more support and understanding with these issues, which may get more problematic as they get older and the difference between them and their peers becomes more marked.

DS1, at 12, definitely understands his version of autism. There's bits of it that he likes and bits that he detests (mostly the tics!)

He doesn't much understand DS2's version, mind. That's understandable, though, as DS2's version makes it impossible for him to ever blend in

Thanks so much for all the replies, lots to think about there.

I wish I could take a peek into the future and see how things turn out for him, I just want him to be okay.

I was so so worried about him starting high school I made myself quite ill which is why at the first sign of trouble I asked the gp for assessment, but he has actually settled in better than I thought he would.

I don't have to make a decision just yet so will see how the next few months go. I find making any decisions hard because of my anxiety, I find it hard to trust my own judgement. OH and other family all insist that he is fine and I am worrying too much so I feel like this all rests on me to decide.

Moopy, I completely disagree with your post. School couldn't, and still can't see any of my ds's issues.
He was a suicidal wreck though.
Mumsnet cannot diagnose anyone, MNers can advise using their collective wealth of experience, but I'm willing to bet that no child in the history of ever has got a diagnosis because MN said so.

Ouryve brilliant post.

Moopy dd was diagnosed at two,her current school miss loads of things in spite of a diagnosis and a statement of SEN. My thoughts are if a school can miss autism in a child with an autism diagnosis I sure as hell wouldn't rely on a school to recognise autism in a child without a diagnosis and would always recommend that a parent asks for a referral to the relevant health professional.

I am a huge advocate of a diagnosis when a child or Yp meets the criteria for diagnosis.
I'm involved with my local parent forum and the number of parents who didn't pursue a diagnosis in primary due to stigma, the child was bright, just coping etc etc and are now in a desperate place because their children have self harm issues, eating disorders, mental health, school refusal. If a child is having lots of struggles then having and knowing the reason for them can actually be enpowering. The difficulties can be identified and strategies can be implemented. Diagnosis in teenage years is tricky and by then a lot of YP struggle to accept it.

I agree support can be patchy but there is definitely more with a diagnosis than without.

As as secondary school teacher I have decided to pursue a diagnosis for my primary school son. I have seen how secondary school children with ASD can struggle, and I've seen secondary school children have mental health problems which have become quite severe and then they have been diagnosed. I wonder if the problems would have got so bad if they already had the diagnosis. I wouldn't think that settling into secondary is the key point, puberty is also fraught, as are the exam years. I know of one student who wasn't diagnosed till Y11, he'd managed up till then, then just fell apart.

Your DS is already apparently displaying worrying behaviours concerning his mental health. I wouldn't take him off the list for something which could ultimately help him understand himself.

You know your son the best. The issues you have listed could be caused by conditions other than ASD such as dyspraxia so it might be worth getting some idea of the nature of the problem so you know how to help him best and maybe get the school to make allowances where needed.

Would echo what noblegiraffe says. Dd has had a diagnosis and a statement since before she entered nursery. In Primary because of the support and the environment (400 pupils,one understanding teacher for the majority of every day,minimal homework, assessments and testing rare etc) she thrived and the autism wasn't really noticeable or a big difficulty.
In Secondary the autism is huge, generally five different teachers every day,each teacher seemingly has different methods,different rules, peer groups alter with lessons because of streaming, it's noisy, practical lessons are a difficulty,some of the topics are outside her understanding and beyond what she is emotionally ready for, it feels like there is constant assessment,more requirement to work with people she doesn't know or like, peer assessment for dd is awful, homework is another pressure. Throw in puberty,changing social demands and dd is a self harming anxiety ridden unhappy child alot of the time and that's with constant TA support,a reduced timetable and every adjustment deemed necessary done without question.
Without the diagnosis which signposts difficulties and brings a requirement for reasonable adjustments there is no way she would be in school.

Dyspraxia is another thing I have wondered about.

Can anybody tell me a little bit more about the assessment process? We are in suffolk and we are going through a pilot scheme for assessment.

They're often both present and often overlap. DS has a diagnosis of both.

I'd say it's the dyspraxia that's really affecting him at the moment - lack of planning, unable to organise himself, unable to get back 'on' a task once he falls 'off' it.

The assessment is observation at school.
Possibly more hands on assessment from an OT - can you do this, can you do that (things like opening a complicated folder, tracing, writing. My DS couldn't open an envelope - OT said that's when she 'knew')
Observation in a room with 1/2 professionals where they'll just ask questions.

The assessment in itself isn't particularly stressful, I have to say.

www.autism.org.uk/get-involved/world-autism-awareness-week/schools-autism-awareness-week.aspx

lonny when you say the OT knew when he couldn't open an envelope, is that with regards to aspergers or dyspraxia? This is the kind of thing ds would struggle with, he fumbles around with chocolate bar wrappers and usually pulls them open with his teeth. He can now use a knife and fork but it took ages and he still looks cack handed at times. Same with laces he can do them but it takes ages and the knot is often too loose.

He also talks far too loud at times, usually while gaming and chatting over the headset. I've read that controlling voice pitch and volume can be a symptom of dyspraxia.

I think I will have to pursue the assessment because I am driving myself crazy. I feel like I am watching him all the time looking for symptoms or looking for things to disprove it. I am on tenterhooks waiting for things to fall to pieces all the time.

I just feel selfish that I am maybe doing it more for me than him. I worry that I am projecting my anxiety onto him.

Dyspraxia. In our HA an OT wouldn't necessarily be involved in a 'straight' autism dx, but he'd been presenting with issues at school round changing and planning so we had an OT assessment.

We were surprised to get a full dyspraxia diagnosis though, it hadn't crossed our minds that it would warrant a diagnosis on its own, we just thought it was a typical co-morbidity with ASD. But he's on the 1st centile for most of their measures. Think the highest he gets is 9th for gross motor skills.

Voice and pitch just as likely to be ASD to be honest. But I'm not getting into online diagnosis

Agree with ouryve too.
As someone diagnosed with AS in her forties, I wish I'd known earlier. It would have saved me wondering why some things seem impossible for me. I might have felt free to turn my attention to something else than how to cope among people. If he has AS, finding out will free his mind. I would stress to him that there's nothing wrong with him if he is on the spectrum - plenty of books written about great people v likely having autism - Mozart, Newton, Turing...
Diagnosis was also not a battle for my 12 y old DS - a few appointments and it was done in 6 months. He has very high self-esteem
It's interesting to note btw, that some people evolve to such a degree that when they are adults they no longer fit the criteria for diagnosis, so having it confirmed definitely doesn't restrict progress.

We have DS 6 with severe autism and LD. DS 8 defo has ASD but we are not pursuing a dx. We have spoken to school where he copes well and although he is quirky he is managing and we feel a dx will not help at all.
He is very hypermobile and have put things in place for this as it does hinder his handwriting.

My son was diagnosed when he was about 14. The process was not too bad for him, more difficult for us parents.
He is high functioning, and sounds similar to your son. Holding it together at school, but letting it out at home where he feels safe.
If your sons bright having a diagnosis that explains his brain works slightly differently will probably help him, because he's going to figure out that he is different to other people anyway. It will help him understand why he finds some things so difficult.

After the diagnosis, there was not much support on offer just a monthly youth club and a 2 day training course for me. However it gave him so much more help at school, he got given a get out of class card for when he was getting stressed, was allowed to sit in the library with a friend at lunchtime, plus as he had trouble writing for long periods, he could have got longer in exams, but he refused.

The biggest surprise was how useful the diagnosis has been for uni. My son has had an amazing amount of support both financial and emotional.

When we were going through the process, I voiced concerns about being worried a label would disadvantage him as he got older, but the doctor told us that it would be up to my son whether or not he told anyone about the diagnosis - although I don't know how this works legally.
Sorry this has turned into an essay, but just to let you know that the little lonely sad angry boy that I cried buckets over when he was finally diagnosed, is now a wonderful happy 2nd year uni student, enjoying living away from home, with a great group of friends, who is frequently too busy to respond to my texts.

mountains I struggle socially myself, I have social anxiety quite badly and have been like it for as long as I can remember. I do wonder if I am on the spectrum myself. I was an incredibly fussy eater as a child much worse than my ds is. I also had sensory issues with clothing. I never had behavioural issues though, my mum was a massive pushover and never pushed me to do anything I was uncomfortable with. She would let me stay off school if I wanted to avoid something which I think looking back now helped me cope and got me through my school years.

I could completely cope with a diagnosis now but I think at a preteen age I would have struggled with it massively.

My DS1 is 9 and he got a diagnosis of ASD 6 months ago. He's found it really helpful to have a diagnosis and a name for the difficulties he has. He's been going to a group for children with SN and their siblings where they ride bikes, play football, cooking, crafts etc and he loves it, he says it's great knowing there are other children like him. It's just my opinion though and my DS is quite a bit younger than yours.

icantfind thanks for your post, it is SO reassuring to read about a child like DS living a full happy life.

He had get out of class cards at primary but would never use them. I doubt he would spend time in the library either unless there was an xbox in there

I have explained all my concerns to the school and they were helpful and put a CAF in place but it has been closed now because he settled in okay. He had a family support worker (social worker?) Go in and chat with him at school, she didn't have any major concerns about him, she offered him counselling for his temper and low self esteem but he refused.

sometimesithinkim do you think you would pursue a diagnosis if your son began struggling as he gets older?

we've been through the process via camhs in the last 12 mo, i dont know if for an older child it would be different, but my son is 9.

Initially we had a lady come out to speak to us, she asked me and DH questions about DS, his birth, his early years, any issues we felt needed looking at, his behaviour, his difficulties, how he is at home, at school...etc.

She then told us she agreed it needed looking into and we got put on the waiting list.

My first appt with the camhs dr himself involved taking DS with me and pretty much going over the same questions, only they were more guided questions and some were directed at DS.

Then i went back by myself to go through what they call the 3DI questionaire which is a tick box exercise basically and depending on the final result will give an answer on the presence of ASD as you have to fill certain criteria.

Then we had a meeting with me and the school senco to discuss how he is at school.

my DS was diagnosed with ASD, ADHD, Sensory Processing Disoerder, Sleep Disorder and Anxiety... but my DS does require full time 1:1 support and we do also get higher rate care DLA for him because of how significant his needs are.

Based on some of what you've described, it would be worth looking into Dyspraxia, DS also has that and it was diagnosed before everything else via a referral to an OT. People do misunderstand dyspraxia, it isn't just a physical problem, it does effect social and emotional development and executive functioning and planning and a lot of the symptoms do mirror ASD.

I would keep him on the waiting list, its really not a stressful process, and it will open doors to help for him in the future if school becomes difficult or untenable.