To want to have my son assessed....

(45 Posts)
Weathergames Sat 12-Apr-14 09:47:38

DS2 (12) is a very high achiever at school.

He is obsessed with Lego and Minecraft and hates anyone breaking any rules he has (out of my 3 children) always been a bit "different".

Recently he has begun to have weird food fads (suddenly stopped eating all potatoes) and won't wear certain fabrics or clothes washed in different washing powders.

He is a real loner and very serious and I feel very sad that a lot of the time he seems very unhappy but he says he is fine.

I really think he is high functioning autistic/Aspergers but school say he is "fine" as he is doing so well.

His dad and I don't live together but he is very involved and supportive and supports the way I feel.

Where do I go from here? If I go to my GP I can hardly take DS2 with me?

Any advice gratefully appreciated.

Faverolles Sat 12-Apr-14 09:53:37

Can you go and see your GP without ds and take it from there?
Ask for a referral to a developmental paediatrician.

Tommy Sat 12-Apr-14 09:54:17

he sounds very like my DS who is also 12. I went to the GP about his eating habits (very limited and has been every since he was a baby). I made an appointment for him but went on my own - not unusual I think.
I asked to be referred to the Child and Adolescent mental health services and we had a few sessions with them. It didn't really help his eating TBH but it did help me in my dealings with him - not worrying about it so much and just accepting him for who he is!
Since he's been to secondary school and I've met loads of other children his age, I have realised that he probably further up the spectrum than some but since it is not adversely affecting his education, it is not an issue for the school.
If you want him assessed for Aspergers - what would you want out of it? There would be little that changed except you coping with it I think.

Tommy Sat 12-Apr-14 09:55:58

I also read a book called "The Highly Sensitive Child" or something like that which was useful

Weathergames Sat 12-Apr-14 09:56:08

I know I have asked myself the same question what good will it do having him "labelled" apart from for me to y sweat and him better I guess and stop beating myself up that he seems so miserable :S

Weathergames Sat 12-Apr-14 09:56:34

Understand sorry

Faverolles Sat 12-Apr-14 10:07:46

We're on the waiting list to have ds2 assessed.
We don't see it as a label, more a signpost to help him.
We have a letter from the paediatrician which means that school is now taking our fears seriously and are putting things in place to hopefully make things less miserable for him. Without the letter (which is as much of a diagnosis as we're going to get right now), I don't think school would be taking us seriously.

90sthrowback Sat 12-Apr-14 10:08:42

OP iiwy I'd ask MN to move this to the SN area.

AIBU can be a bit of a bun fight and if you've concerns about your DS you really don't want to be on the receiving end of people possibly questioning your parenting.

On SN you will get knowledgeable experienced parents who've worn the tshirt.

Weathergames Sat 12-Apr-14 10:08:48

How do they assess them do you know what the process is?

BalloonSlayer Sat 12-Apr-14 10:09:13

When I had to take my DS to the Doctor about something I thought he might be sensitive about I wrote a letter, took it with us, and asked the GP to read it first. He then asked DS questions.

DS was a lot younger then than your DS, so would not have been suspicious.

However you could do the same and tell your DS that you are going about his eating habits.

Weathergames Sat 12-Apr-14 10:10:27

Am not really worried about people questioning my parenting tbh - I have 2 older DC who are fine and no issues at all and all been brought up the same.

MissDuke Sat 12-Apr-14 10:13:27

When I was in a similar position, I went to the GP without my dd and he went ahead and made the referral. School also said they didn't think there was a problem, but they were very wrong so if your heart says you think a diagnosis would benefit him, then I say go for it. Good luck.

The process can be long. You should start by researching neurological disabilities such as ASD p, dyspraxia and making a list of all symptoms that are relevant. Next to that you should give one but preferably two real life and recent examples. Also include early years examples.

Give this to the GP with your request for a referral for further investigation. Avoid CAHMS unless that is the only referral pathway.

zzzzz Sat 12-Apr-14 10:25:05

I agree that you will get more in depth consideration on the SN boards, as the audience is more focused and many MNSNers won't post on AIBU because it is often very disablist/aggressive.

That said, make some notes, go to GP and ask for referral for assessment. At 12 I would expect that the young man would have to be aware and involved I seeking dx, so you will have to discuss I with him.

charliefoxtrot Sat 12-Apr-14 10:27:25

Have a look at the National Autistic Society website. Autism is a huge topic and they have lots of good information. Labels are not always a bad thing - since DS was diagnosed he now gets full time support at school and receives DLA. It's also much easier for new people (new teachers, etc) to get to grips with his issues because they have an idea what to expect.

I would also add that I understand how you feel. When DS was diagnosed it was the worst time in my life, but it was also strangely liberating because after years of feeling like things weren't quite right, I was finally sure that it wasn't my fault. There are implications for you too, and you should seek out support for yourself as much as for him.

Your local authority should have a special needs assessment service (SENA). Give them a call and they can talk you through how the assessment process works for his educational needs. Your GP should be the starting point from a medical point of view.

Mitchy1nge Sat 12-Apr-14 10:29:47

why avoid CAMHS starlight?

RainbowSpiral Sat 12-Apr-14 10:31:10

I went through the process of having an assessment of my ds2 aged 7 to 8 at schools advice. His problems were mainly school based and he did not achieve a diagnosis for Aspergers. This helped at school as they gave him more learning assistant support and stopped waiting for him to get a statement of special needs. It helped us as we never thought he had Aspergers, just some of the things towards it and bad school based tantrums.

For us (Scotland) the process was one appointment with general paed. doctor. One speech therapy appointment (about understanding language). One appointment with Prof in child communication (neurology). She did not put ds2 forward for an observed assessment (where they video your child playing etc and health professionals score things) as she expected a negative result. We agreed we didn't want this and unlikely to show much as most of the problems were tantrum / crisis point based. We did have a right to demand this final stage, but if a senior Prof thought the didn't have Aspergers it seemed pointless.

All this took about a year though as appointments very slow on NHS and we were not urgent.

RainbowSpiral Sat 12-Apr-14 10:33:11

I should add first paed. decided to refer ds2 for ASD and not for ADHD or other assessments so it could have been more complex. School at that stage thought he had ADHD as he wouldn't concentrate. More recently we have found out he has dyslexia so lack of progress in school is not as behavioural based as they thought when he was little.

CAHMS expertise is rarely neurological disability and they often prefer to find a mental health cause to behaviours and subsequently look for environmental triggers such as parenting or early years trauma.

Weathergames Sat 12-Apr-14 10:39:33

He has been assessed for Dyslexia as one if his Primary school teachers thought there was an "issue".

I also had his hearing tested as his speech is very unclear sometimes but all fine. He has great difficulty expressing himself in his speech. Difficult to describe.

Is it disordered?

Dawndonnaagain Sat 12-Apr-14 10:45:20

The point about having a 'label' is it can put into place a great deal of help both for you and your ds. Not just help at school, but ideas for you both regarding things like coping strategies, learning new things, being more flexible etc.

Hedgehog80 Sat 12-Apr-14 10:48:42

I have similar concerns about my ds1 so will be watching this thread with interest as part of me feels a diagnosis will lead to elp and support and part of me worries about him having a label.

To be honest thought think even if I not push for an assessment sooner or later school will as he has got quite 'unusual' very quickly.

Weathergames Sat 12-Apr-14 10:50:28

Is his speech disordered?

Mitchy1nge Sat 12-Apr-14 10:52:56

thanks starlight, I just wondered because it was CAMHS who first raised the possibility of an asd and I wondered if they had a tendency to see it whether it's there or not

Yes

WilsonFrickett Sat 12-Apr-14 10:55:03

Please take this in the spirit its intended. I have very strong opinions on labelling and an 8 yo with ASD.

In the nicest possible way, your son is already labelled. You, who love him more than anyone, have labelled him here as 'different' 'a real loner' and 'sad'. I don't say this to be mean to you - far from it - but to point out that we all label everyone.

Now at the moment, the labels you give your son are neither harmful or helpful - they are what they are. A different label - one attached to a diagnosis - could be the doorway to the help and support he needs to thrive.

A different label, from a different person - like anti-social, unco-operative, weird, freak - could lead to bullying, depression, and all sorts of problems.

Do you see what I'm getting at? So what if he gains another label. It could make a huge and positive difference to his life.

Not all CAHMS are equal. If CAHMS are recognising it they may have had relevant training but they still are unlikely to be specialists, especially when it comes to the more complex presentations.

HairyPorter Sat 12-Apr-14 10:57:38

Watching with interest. Ds is only 3 but I think he is asd for a number of reasons. Not keen on getting a formal diagnosis as I think we are handling him fairly well as it is anyway. Also from a school point of view we're going down the laid back montessori approach where he's free to express his individuality. I don't think ds would cope with rigid structures/ timetables as once he's involved in something you can't peel him away and it's difficult for him to switch off and do something else. I can't see how a formal diagnosis helps if you're coping as a family and your child is coping at school. Happy to be corrected though!

Weathergames Sat 12-Apr-14 10:59:36

Yes I guess it is disordered he struggles to get sentences out sometimes and he jumbles his words up.

Rhinosaurus Sat 12-Apr-14 11:00:16

You could do a bit of searching and find out the ASD pathway for your area.

I am a school nurse and I can refer to the ASD pathway, under 5's go to a paediatrician, over 5's go to CAMHS.

You may be better off arranging to meet up with your school nurse if they can refer, as they generally will have more time to discuss your concerns rather than a ten minute GP appt, and can also liaise with school to put support into place.

Will he need extra time in tests/exams?

Weathergames Sat 12-Apr-14 11:04:32

He was "expected" to get into Grammar but the school were surprised he didn't (2 Marks off I think) and he didn't do as well as expected in his yr 6 SATS which made me think there is some issue or him with tests/exams.

WilsonFrickett Sat 12-Apr-14 11:05:20

That's great things are working for you without at dx Hairy, especially at school. That's not the case for most DCs I know who have a dx, most of them are continually battling to get what they need.

NeedsAsockamnesty Sat 12-Apr-14 11:09:28

Are all these recent things?

As in brand new behaviours and nothing like it has previously happened

HanSolo Sat 12-Apr-14 11:14:04

It could be anxieties, perhaps exacerbated by his isolation. CAMHS can help with that, and your GP can refer him to CAMHS, without seeing him- I went to my GP without my DD, with a (very long) list of our concerns, and he made the referral straight away.

HanSolo Sat 12-Apr-14 11:14:34

Sorry- I meant to add 'Good luck'! thanks

MichaelaS Sat 12-Apr-14 11:16:24

Also watching with interest. My DS1 is in the queue for assessment. Like HairyPorter at 3 we were managing it well an had no major concerns except his day nursery reported he struggled to follow instructions and was very self led in activity choice (struggled to join /accept adult led activities).

Fast forward almost 2 years and his school are pretty much treating him as ASD, they have a specialist language provision so have more ASD kids than average schools.

I would say having a diagnosis makes a huge difference to what help/support can be funded, what techniques are used and also in terms of self worth for older children. In the adult Aspergers community I heard it described like this... "Getting a diagnosis helped me change my view of myself from a failing normal person to a successful autistic person". It can also help parents and caters access peer support groups, something which can be really valuable, and something families don't realise they want until they have tried it. Speak from personal experience there!

Good luck OP and I hope you find a way to get an assessment in a way that doesn't upset your DS.

Dawndonnaagain Sat 12-Apr-14 12:00:10

Three of mine have extra time in exams, they need the extra time to process the meaning of the question and then to get it from head to hand as it were. It's common for people with ASDs to have difficulty getting things on paper. Ds2 has been given speech software for his essays at uni. (A positive of diagnosis)!

FanjoForTheMammaries Sat 12-Apr-14 12:08:35

A diagnosis of a neurological disability is not a "label".

Like any other diagnosis is not a "label".

autumnsmum Sat 12-Apr-14 12:16:21

I agree with fanjo it's not a label my dd2 was diagnosed with autism at two realistically it was essential we were on the diagnostic pathway as she attends a special school . Re cahms I have had some dealings with them with ds and In our area they seem ok

zzzzz Sat 12-Apr-14 13:14:06

Has his language ever been assessed by a speech and language therapist?

I imagine it must have been if it is so markedly different. What did the SALT think?

Hairy. If you are interested in discussing the ramifications of dx versus no-dx then here are loads of people who have taken both paths on the SN board who love that sort of chat and would be interested in your take on things. Come and tell us about your experience. It helps to have lots of different approaches discussed.

Soapysuds64 Sat 12-Apr-14 13:26:45

am in a similar place with my dd (age 12). I took a letter to the gp at about Christmas time, with all the concerns I had about her - fussy eater, obsessive, unable to lie and so on - and the gp refered her to CAHMS (Scotland). At this point, I had a chat to her about Aspergers, we watched a fair bit of Big Bang Theory and she had already read the Curious Incident of the Dog in the Night so she was clued up anyway. She has seen an educational psychologist who agreed there were some concerns and have referred her further, although. Like your case, she is not having any problems at school (nor causing any), and so they are not interested. However, she will be going to secondary in August, so I want to get the ball rolling now before any stress with transition kicks in.

Goldmandra Sat 12-Apr-14 14:16:57

If you are going to ask for an assessment you will probably need to make a case for how you feel a diagnosis will help him.

My DDs have both been diagnoses and the benefits have been in receiving support in ASD specific units at school, getting statements of SEN (this was easier even though it should have made no difference) and the biggest for DD1 in particular (dx at 12Y) is a greater understand of themselves and why they feel different. DD1 said she suddenly went from feeling weird and alone to feeling like part of a select group. It was a great and much needed boost to her self esteem.

I didn't take mine to the GP with me. It is better to be able to speak honestly without fear of putting them down. There will probably be a long waiting list but make sure the referral is sent anyway.

Children often mask their difficulties in school comprehensively and I know lots of parents who have been told by schools that their child is fine. Lots of them were later diagnosed with ASD.

Assessment is often a long drawn out process which parents can find quite stressful. Professionals send reports of observations which sound like they are discounting the parent's concerns but when you know how to read them you realise they aren't. It's also quite hard coming to terms with a diagnosis, even when you're expecting one. Prepare for a bit of an emotional roller coaster if it happens.

Some people find that well meaning friends, family and school staff try to persuade them that the child is fine and just needs time, a firm hand,etc. Some won't accept the possibility at all because of preconceptions about ASD based on non verbal children who also have severe learning impairments. Just nod, smile and take a break from these people if possible.

The professionals assessing the child often like to be the ones who bring up the possibility of diagnosis with the child or control when it happens. I know parents who have been criticised for jumping the gun and telling their child too soon. They also like to take older children's views into account when considering a diagnosis so your DS won't end up with a diagnosis he doesn't agree with.

I hope the process goes smoothly and relatively quickly for you and your DS.

Sixtiesqueen Sat 12-Apr-14 15:06:10

I work for the NHS and privately diagnosing autism.

In general, I think having a diagnosis is a hugely important part of being on the spectrum. As people get older, it helps hem understand who they are.

We have many referrals from adults who have always felt 'different' and lived with it, but really want to know.

Good luck with whatever you decide.

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