To want to have my son assessed....(45 Posts)
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.
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.
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!
Yes I guess it is disordered he struggles to get sentences out sometimes and he jumbles his words up.
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?
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.
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.
Are all these recent things?
As in brand new behaviours and nothing like it has previously happened
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.
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.
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)!
A diagnosis of a neurological disability is not a "label".
Like any other diagnosis is not a "label".
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
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.
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.
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.
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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