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to not pursue asd diagnosis for 12 yr old?

(106 Posts)
cabsarehere Tue 09-Feb-16 11:46:02


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.

gandalf456 Tue 09-Feb-16 11:55:01

My 11 year old is prone to angry outbursts and when she was tiny I did have her assessed and they said she didn't have anything but as she's getting older I'm getting concerned not so much by ASD but ADHD. Her attention span is very very poor and she is immature and I can see that she annoys people sometimes with it especially when she is jumping all over the place and messing about. However she is at that sensitive age and she is getting support from the school which is amazing. I could do support too but nothing's going to change the way she is and I am just going to have to find a way to manage it because i dont want drugs. You could go to assessment anyway. He might not even have asd. It might just be anxiety. My daughter is very anxious. She might not even have ADHD but anxiety can manifest itself that way.

sorry I haven't been that helpful but I know what you mean and good luck with whatever you do

makingmiracles Tue 09-Feb-16 11:56:16

My opinion would be only go for it if you've got the strength to fight for help/diagnosis.

My ds also 12 has been under paed for about 8 yrs, also seen camhs. He's behaviour is often off the scale, he's been soiling since 6, so for 6 long years and was excluded several times between 5-11.

I am running out of fight to be honest, it wears you down, esp as appts are often 6-9months apart. Don't feel we've achieved anything in past few years and only assessments done have been Conners scale.

I literally am on the verge of giving up and just dealing with him in the way I see fit- my guesses are on odd/ pda so use approaches that other parents with kids like that use.

Good luck whatever you decide

Mistigri Tue 09-Feb-16 12:00:43

What support do you think he needs?

I tend to think that a diagnosis is only useful (in milder or borderline cases) if it's going to lead to some active support or change that will improve the child's day to day life. So I would consider drawing up a list of the benefits of proceeding with an assessment - support that could be offered, peace of mind for yourself, etc - and weigh them up against the downsides.

I am fairly sure that my DS13 would have been at least referred for assessment for an ASD if he'd attended a UK primary school, and he did have a number of ASD type traits as a young child (remarked upon by his speech therapist as well as teachers), but I am now certain he is not on the spectrum.

Outbursts of anger are very common in teens and preteens ...

cabsarehere Tue 09-Feb-16 12:04:37

Does your son have a diagnosis makingmiracles?

This is what worries me, putting him through the stress of an assessment, potentially telling him that he has a condition that he will not be able to comprehend and will just think 'I have something wrong with me' and all for little gain in terms of support.

0hCrepe Tue 09-Feb-16 12:07:01

I think that's a very good question. an official diagnosis won't change him but can be useful as a label if you want more support in some way, for example in school or with behavioural issues.
I think you are right to ask if the stress of the diagnostic process is worth the outcome?
If you suspect he has asd or adhd you can still use the strategies without the official diagnosis- so lots of warning about changes, avoid over stimulation, a calm environment, enough sleep etc. There are lots of tips in books and on websites.
My ds has definite but mild traits but manages very well in school apart from being disorganised and lacking concentration. I'm sure I could get a diagnosis if I pushed but it would serve no purpose.
What does your ds say about it?

makingmiracles Tue 09-Feb-16 12:10:21

No he doesn't, as I say it's been an uphill fight all these years. He has problems on a daily basis both at home and school.
Growing up for example these were his problem behaviours-running off in underwear-climbing through Windows and scaling 10ft wall and running off, escaping from infant school and running off into town, anger towards adults and children, stealing, at one point he was being floor restrained at infant school by 4 teachers at a time, the class were being removed from the classroom and way from him, he was having isolated playtime without other children.

I think you will find its very hard to get them to do any official proper assessments on him, once they do that and potentially find a diagnosis it means schools etc have to put their hands in their pockets and fund ways to support him.

Cmuir18 Tue 09-Feb-16 12:10:48

I am a primary school teacher and have a vast experience of working with children with a range of asd disorders.

Personally and if I was in your position I would not pursue a diagnosis. Unless your son is struggling socially and you feel he will not cope in mainstream education or 'normal' social situations, I would suggest continuing as you are and possibly exploring strategies to help with the anger.
If the anger is a regular issue and you feel he reacts inappropriately that isn't linked to hormones you could maybe seek support from a gp who may be able to make a referral to a children's psychologist for extra support! This would normally only happen with extreme cases though.
Unfortunately we still live in a society where diagnosis comes with a stigma and if he is coping well and is happy as he is I would continue. Schools are limited to what extra support they can provide and it sounds like he is coping at school so they would probably be unable to help.
It may knock his confidence and self worth getting a diagnosis at this time and he is at a vulnerable age.

makingmiracles Tue 09-Feb-16 12:14:30

Oh our paed said he's not on spectrum as he makes eye contact-that's a consultant paed!!

It does make me cross somewhat that it seems to be a postcode lottery, his cousin is a few yrs younger and lives upcountry and they were given a diagnosis of asd very quickly, although his behaviours are no where near as bad as my ds and he also makes good eye contact and communication is good.

Think it's very much down to where you live and the paed you get.

educatingarti Tue 09-Feb-16 12:17:33

Op, I work with a lot of teenagers with ASD ( tutor). It doesn't have to be phrased as " something wrong". It can be " everyone has a unique brain. They are all a bit different to each other. Some differences care bigger than others. With your type of brain, your strengths are x, y z, but you find a, b c tricky. People with your type of brain are sometimes said to have Aspergers, but it doesn't really matter if you give it a label or not. The important thing is that you know what your strengths are and that we workbout ways of helping you with things that are tricky."

Having a diagnosis of Aspergers ( or dyslexia or ADHD) can be stress- relieving for the diligent child because they begin to understand that it isn't their fault that they find x and y tricky and it isn't just a case that they aren't trying hard enough.. It doesn't mean that difficult behaviour etc gets excused but there is an acknowledgement that it is harder for them than some others because of their particular type of brain.

It can also mean that school may cut them more slack, recognise the anxiety that is behind their behaviour and offer more sympathetic support!

KestrelThestral Tue 09-Feb-16 12:18:20

How is your son in himself?

We have a diagnosis for ds2, but we felt we had no choice - we could barely cope with him, he gets suicidal, he feels different to other people. The fight for a diagnosis was horrible, with few rewards (support is non-existent), but the biggy for us is that he can start to understand himself.

Ds1 we suspect has ASD, but we don't think a diagnosis at this point would benefit him - he's 15, not too long left to be at school, he can be difficult at home, but we understand him and can help, we have talked about ASD to him, and he does feel that he is, so is understanding himself better.

Support aside (because if your son is managing ok in school, it is likely to be sketchy at best!), I think this decision has to take into account how your son is.

I have recently found out I have ASD. I have no idea how things would be different had I known from a younger age, but I suspect it would be, as I would have a better understanding of myself, and maybe I wouldn't have spent my life doing things because they were the right thing to do, instead of being able to be me.

Sorry, that's waffly and not to the point at all, but I hope it helps a little.

thisishardwork Tue 09-Feb-16 12:22:44

know what you mean. We are pursuing a diagnosis for a slightly younger child, but like you I worry about the effect on self esteem for a child who already feels different.

However, we have concluded that without it, I will be "that mother" forever. For the last few years I have had to try to explain a wide range of behaviours/issues which will make more sense under one umbrella.

We are also worried about secondary school/adolescence without "something" to explain to the school they have to look out for our child (very shy, so won't stand out as struggling even though stress levels will be through the roof).

I did ask that if we got a diagnosis, what doors that would then open in terms of help...

We've taken the plunge that a diagnosis is the way to go to at least have something on file that schools need to take note of, but I can see why you would be reluctant.

KestrelThestral Tue 09-Feb-16 12:23:39

Sorry, I made no point at all grin

If he is ASD, then a diagnosis can only be a benefit, support or no support.

For the child I don't think the assessments are particularly taxing - school observations which he is likely to be unaware of, ADOS assessment which is one appointment, possibly an appointment with a consultant.
It's far, far more stressful for the parents!

cabsarehere Tue 09-Feb-16 12:24:20

It isn't just the anger that makes me think he possibly has asd.

He also had a speech delay, he spoke but was very unclear and hard to understand.

He is quite obsessed with video games.

Struggles a bit with fine motor skills, knife and fork, shoelaces etc and learnt to cycle a bit late.

He has friends but does seem to be bottom of the pecking order, banter seems to go over his head or just upsets him. He is shy around new adults. He does make eye contact.

He's a fussy eater although is improving with age.

The only things that really cause problems are the anger and occasional friendship issues.

5Foot5 Tue 09-Feb-16 12:28:05

I freely admit I have no experience in this area but can only relate the experience of someone I know who was in this situation.

Their DS exhibited ASD behaviour but they did not go for a diagnosis since they didn't want him to be "labelled" and he was high-functioning. In fact he is extremely bright.

The problems started when he was in the Sixth Form and his behaviour began to get very stroppy and difficult. On a number of occasions the school were on the point of excluding him because of his behaviour and his parents tried to plead his case by suggesting he was on the spectrum. The school basically said "Where is the statement to back that up". The DS would not co-operate with any diagnosis and at the age he was then the only way to force him to do that was to have him sectioned - which they obviously didn't want to do.

Thankfully they managed to keep him in school and he has gone on to Uni, but it was a worry for them and I believe they did begin to question their earlier decissions a bit.

cabsarehere Tue 09-Feb-16 12:32:33

He is mostly okay. He has had occasions ( during meltdowns) of saying he is worthless and ugly and might as well be dead. He does have low self esteem.

He gets up every day and cycles to school with his friends with no fuss. He eats and sleeps well and on the whole is okay. School have no concerns although he did have issues at primary.

I think his behaviour was a bit wobbly between oct-jan because he was settling into high school.

I think the appointment will take a few more months yet and I should have a better idea of how things are going at school by then.

It's interesting reading all the different view points.

figureofspeech Tue 09-Feb-16 12:36:14

ASD is a spectrum condition so no two autistic people will display the same symptoms, so just because one child has good eye contact it doesn't mean that child doesn't have ASD. My son is officially diagnosed as having high functioning ASC and I'm glad he has the diagnosis because he has a lot more official support now. The school is a lot more aware and he is now in a smaller classroom which is less stressful for him and he is reaching his mile stones now with teachers who are properly qualified in dealing with ASD.

Speak to the Burgess Autistic Trust or the National Autistic Trust for further advice and support to decide whether diagnosis is right for you. I would strongly encourage you to go for diagnosis as you will be able to access targeted support for him when you need it and help him reach his full potential. Puberty affects all children and particularly ASD teenagers so I really would urge you to stay on the waiting list.

thisishardwork Tue 09-Feb-16 12:36:54

obviously, every child is different, but I do worry about the effects of puberty etc and the presumed increase in independence. It's easy (relatively speaking) to cope when it's still acceptable for me to micro manage.

makingmiracles Tue 09-Feb-16 12:56:13

I get that thisishardwork, my paed said I should be letting ds down into town on his own now at 12, I tend to disagree as he has no road sense, is a risk taker and other children pick up his vulnerability easily(ie he is easily manipulated to do something that the other children don't want to do themselves,result being that he does whatever they say, they scarper and ds ends up in trouble)

thisishardwork Tue 09-Feb-16 12:59:54

yes, the roads! I really feel I need to do door to door, not sure if/when this will change and how embarrassing this will be. Also agree re gullible nature.

ouryve Tue 09-Feb-16 13:00:10

How is he feeling about the difficulties he has? Is he frustrated about how much he struggles with friendship? Frustrated that he finds so many things difficult to do - embarrassed, even?

You need to avoid the possibility of a diagnosis signalling something "wrong". Think of it more in terms of understanding why he already dances to a different tune from his friends. Why every day things already get to him to the point that he regularly blows his top. It's about understanding because, when you have that understanding, the fact that there are lots of other people in the same position as you for the same reasons can help you to feel a little less alone.

There's also the bonus of knowing that you have a condition that confers some advantages - that same persistence which in his case manifests as an addiction to video games can also become quite a glorious thing - in DS1's case as knowing more about coins and buses than most 12 years olds even have the patience for.

One extremely important thing he would get from a diagnosis would be legal protection.

You don't know how the future is going to pan out for him. As he goes through secondary school, the pressures on him are going to increase, both socially and academically. You do not know now how he will react to this and how it will affect his mental health. With a diagnosis (if he warrants one), you already have the hardest bit of garnering support out of the way and have the right to concentrate on getting school to agree that he would benefit from xyz, rather than them thinking you are helicoptering your special snowflake who just needs to pull his finger out and stop being silly.

Without a diagnosis, now, if he runs into problems in adulthood, diagnosis and help is a lot harder to come by.

Having a diagnosis or not isn't going to change who he is and doesn't change the things you can do with him to help him to self regulate. Knowledge is power, though.

Anyone who tries to use the idea of stigma and "labels" to discourage you can eff off. It's not their life. Stigma is not a good reason to avoid something. It's just a message that society needs to get its collective act in gear and stop being so ridiculous. Not obtaining a diagnosis of type II diabetes because of the stigma associated with it (ie perceived as a disease of fat people) doesn't make someone not diabetic. The same logic needs to be used here.

ouryve Tue 09-Feb-16 13:02:10

And the eye contact issue is definitely a red herring - both of my boys are a long way from the fringes of the spectrum, in their own respects, and both can maintain eye contact.

ouryve Tue 09-Feb-16 13:04:38

He has had occasions ( during meltdowns) of saying he is worthless and ugly and might as well be dead. He does have low self esteem.

It's absolutely worth not backing out, for this alone.

LonnyVonnyWilsonFrickett Tue 09-Feb-16 13:08:55

ouryve is here, that means I don't have to write my post grin

I'm an advocate of diagnosis, it has helped me hugely as a parent. School support is patchy at best, but better than nothing and the dx is like my shield especially now DS is preparing for high school. There is a framework. They're supposed to work to that framework. If they don't, it's their problem - it's not me being a pushy parent.

The other thing which I don't think has been mentioned is the positive effect diagnosis can have on children's self-esteem. Children know they are different. Having a dx of autism can help form bonds, help them grow up as part of a tribe. Help them get angry. Help them change the world, instead of the world changing them.

Look at resources like the Curly Haired Girl on facebook - there's a young woman who is using her dx to support others and explore her own identity. Inspiring stuff.

moopymoodle Tue 09-Feb-16 13:12:05

I wouldn't pursue it. His school would have pointed anything out if he had any serious symptoms.

Mumsnet can be a nightmare for diagnosing family. If your prone to anxiety you might be projecting fears onto him. Why not seek advice without a diagnosis or him knowing before you go ahead?

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