DD (13) probably has autism

[EmpressOfTheSevenOceans]

Hello

I've never posted in here before, but...

DD is being referred to CAMHS by her counsellor to be assessed for autism. On one level it's a big shock, on another it answers an awful lot of questions and makes perfect sense.

It's completely new territory though. We don't know how or if her getting a diagnosis will change things, or how. We feel guilty about not realising earlier. And we don't know what comes next.

Is 13 very late to be diagnosed? What will it be like with CAMHS?

Thank you.

Just replying to say I'm in the same boat with my 12 year old also being assessed at the moment. Like you I've felt guilty, although I have read that it is very common for Aspergers in particular only to be picked up once a child moves to secondary school and the increasing demands of that environment make the child's difficulties more apparent.

We have had our first appointment with CAMHS where the consultant agreed it looked like Aspergers but an official diagnosis will take many months of assessment. However, armed with that information, I have spoken to the school and they have agreed to do an IEP (something DS has never had before) to help with his appalling organisation skills / inability to understand homework instructions / apparent lack of common sense / very literal understanding etc. So if nothing else, it means the school are trying to support DS rather than just treating him as a naughty child.

No doubt someone else with more knowledge than me will be able to answer your questions more fully. Good Luck.

Thanks, pencilsharpener - especially for the bit about lots of kids being diagnosed at this age. Good luck to you too.

DD's organisation skills and common sense are fairly nonexistent as well, and she really struggles to understand people. I think one thing we're coming to realise is that she doesn't have much concept of cause and effect (or is that just being a teen?)

She's bright, articulate and looks older than she is - in a way that's all part of the problem. It's far too easy for people, including teachers, to look at her and see someone she isn't.

I'm really glad your school are coming on board with it, I hope ours will too.

Hi empress, I have an 11 yr old daughter whomwas diagnosed with Asd when she was 9. Getting the diagnosis has been beneficial for us, it helps us to understand her better.

Also once we told her about her diagnosis she became much more comfortable in her own skin.

School's are often difficult places for our children, especially those who mask their difficulties away from home like my Dd does.

Acting "normal" at school is exhausting for my Dd, she needs lots of support. Most of which comes from home.
We use visuals loads to help her with her organisation and with behaviour management.

Good luck

I meant to say, try to read Tony Attwood's Complete Guide to Aspergers. Its very readable, it may be in your local library.
It is a book you can dip in and out of depending on your daughters issues.

Plus ask any question you like on here, there is usually someone around who can help.

Hi, Ineed.

An awful lot of that sounds familiar.

I've just read a bit of the Tony Attwood book on Amazon & parts of that are jumping out at me too. The not accepting that she's a child, the being used as a TA in class, the latching onto unimportant points & not letting them go.... I've just been emailing huge chunks to DW & I'm about to get it on Kindle.

It's really reassuring to see that not everyone gets recognised & diagnosed as a toddler!

I went to an autism awareness session a couple of weeks ago for parents with children newly diagnosed. The group was split roughly into thirds with those diagnosed before 5, those at primary age and those in secondary. So yes it is not uncommon to get a late diagnosis. One was practically an adult (17) although the mum did say she had been trying to get support for ten years . Nobody, raised significant issues about my sons till they were 9 although they have more than made up for it since.

10 years???

How are your sons now, OneInEight? Has the diagnosis helped?

Yep, ten years. Apparently, they decided it was all down to poor parenting despite the fact she had two other children with no problems.

My sons are nearly eleven now. We only got the firm diagnosis in April but yes I think it has helped to get them more suitable educational provision and also how we deal with behaviour issues. They are also now statemented which has helped even more. We were tearing our hair out this time last year over ds1 but he is much happier now. Still got major problems with ds2 but hopefully he too will improve.

my son was diagnosed at 12 we didn't believe until we read Tony Attwood's Asperger's Book. We knew he was different in some way before that but misunderstood the jargon used in Autism and wrongly discounted it, like we didn't realise empathy and sympathy didn't mean the same thing and imagination didn't always mean pretend it means social imagination. and he has hypermobility in his joint we didn't realise about either. He had not speech delay and no trouble with baby milestones and crawled early walked on time smiled and talked. but it become more and more obvious and when the teenage year came in the difference between him and his peers became and abyss as they soared ahead with teenage social skills and relationships the usual stuff , that where my son came undone as it were. He always had trouble with writing and sequences and concentration and to could not cope at school. anyway I could type all day. Its not too late to help your son. Cahms will do some assessments may refer him to a community paediatrician an expert in A.S.D. He might see an occupational therapist about organisation, trouble with writing thing like that. It may be different in England. i'm in west Lothian. My son is now 14. also take care of yourself and your partner if you have one, diagnosis can be a bit of shock and may mean more to you than you think it will. Also this board is great for getting advice, you are in the right place.

The part about empathy and sympathy, and the different kinds of imagination rings huge bells, TimidLivid. DD genuinely cares about other
people and she's brilliant at making up stories and drama - she just struggles really hard to actually understand social rules and how other people think.

My Dd3 is the same, she has massive empathy for some things for instance she once said she felt sorry for her cuddly toys if she cuddled one more than the other and she wrote a timetable for cuddles so she wouldnt miss any of her toys out!

However she has very little empathy with real people and cannt moderate her thoughts and feelings towards others.

Yes that's the thing my son was so witty and can tell scripted jokes but cannot take banter or mild teasing at all. He feels sorry for people when they are hurt yet cannot tell if someone is being nice or malicious a lot of the time. He never flapped either but ran everywhere and had no sense of danger. He was sensitive to noise but we just thought he had sensitive ears and didn't equate that's with autism which seemed like a huge word. His diagnosis is aspergers but I just say autism now I got over the word being scary and autism to me the word autism is more suited to the impact it has on him and us. Aspergers to me makes people say oh a bit of a geek. When there is a whole sensory aspect to it. Its much more than that. I do waffle . A lot of children do well after diagnosis with help and knowing what you are dealing with is a big help.

Oh Yes to the sensory issues. They are such a big problem for Dd3 that I recently asked the Occupational Therapists to give her a seperate diagnosis of Sensory Dysfunction which they did.

I feel that this will help people to understand why she has so many problems.

My dd2 is 12 & just started assessment. We all work(ed) in SN and have used our own strategies until now but concerns about starting secondary promoted us to start assessment.

Sensory, yes! DD's very, very tactile, has to touch everything and usually cuts the labels out of her clothes. She hates textures in her food though.

Autism does feel like a huge word doesn't it? How is your DD2's assessment going, DoctorDarcy?

V slowly. 2 CAMHS appts so far ( requested referral in June).
First came at a good point and then passed to worker who is supposed to be working on anxiety management but dd2 is denying all anxiety.
She's settled into the new school well and her teacher has picked up on a couple of shutdowns so ok there for now.

My dd was diagnosed last year at the age of 13! She also has lots of coexisting difficulties. I alway felt she was different to other children from being 18 months but I was fobbed off/not listened to so decided that whatever it was we would make sure she was ok.

Primary always told us no issues in school but on starting secondary she couldn't cope and went into shut down. We had already started the ball rolling as we knew that she would not cope with secondary and had been to see a new GP with all our concerns who had referred to CAMHS. We also knew nothing about Autism apart from the classic, non verbal, rocking image that the media portray. It's been a steep learning curve.

We've recently had a copy of DD's school records as we are heading to tribunal and some primary records are amongst them. There were several IEP's and the things on them indicated that there were in deed problems. 2 years of IEP's (and there were prob more as the latest one in there still had targets on it) and we nothing about them!

I volunteer with our local NAS branch and we have a gentleman who attends some of our meetings who has been diagnosed at the age of 70! He feels a sense of major relief because for years he thought he was crazy!

Hi ,
my ds2 was diagnosed end of last year aged 13. I had no idea , had never even heard of aspergers until he started high school and couldnt cope. he was just sitting with his head on the desk and no one knew why he was so sad . I thought he was being bullied at first. As the hormones kicked in the behaviour problems kicked in . its only recently after reading lots and talking on here that i am getting to grips with it. Most of the leaflets and stuff i have read dont even describe my ds2 , i think hes maybe not 'typical' of AS , not sure.
I have also felt bad that i didnt know and that i could have saved him from what happened starting high school but i think its only once you know about AS that you really start to see it .
sazale , shocking that you knew nothing about the iep . the same thing was discovered by a friend a while ago . im going to ask for ds2 records as we are going through some problems at school and i wonder if all has been above board!

I think we'd better ask for DD's records too!

I know what you mean about not recognising it, sazale and thriftychic. DD doesn't fit the popular stereotypes at all - mostly - but then we notice things like how she's always needed to know exactly what's going on, and gets very upset at unexpected changes.