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New diagnosis of Autism

Kazzie August 9, 2019 15:31

DD's paediatrician, after a 3 year long assessment period, last week finally decided that she was on the Spectrum. He gave me a sheet of paper which had a list of books on it mostly aimed at much younger children. DD is 17.

The paediatrician said he will see her again in 4 months and was writing to the GP and college ,although she doesn't currently have a course for September due to the college being concerned about her mental health.

I did mention the ASD diagnosis to her mental health care coordinator but she stated that it's not an area that they offer support for- adult mental health services.

My question therefore is does anyone know what I do to get DD the support she will need? Should I be going to the GP to get a referral to the learning disabilities team.

I just want to get the best support for her and TBH am frustrated that it's taken this long to get to a diagnosis.

moo August 9, 2019 16:11

You as the parent can apply to your l/a to get an EHCP... even if in school parents can apply on their childs behalf without school....

This, if granted, will then empower your daughter & you to garner support for her at college ( until 25 I believe if in educational learning ) Your dd will then get the appropriate support...

Join AUK & then you can try ringing the AUK helpline for legal help & support it will be so worth it for her to find a college course that inspires her...

Good Luck xx


Xx moo xx

Edited 09/08/19
aquilegia August 9, 2019 17:13

Yes, definitely apply for an EHC. Your local authority should have information on their website about how to do that as a parent. Also put together a pack of information to evidence why your daughter needs the additional support so the LA cannot try to wriggle out of doing an assessment of need.

Have a look online for books about girls with autism. I have quite a few friends with girls who have been diagnosed late as girls can tend to present differently than boys with autism as they tend to mask and copy peers. V frustrating to have to wait though!

Also to go the Ambitious about Autism and the National Autistic Society for support and information. Support post diagnosis can be a postcode lottery. Maybe see if there are any local parent support groups?

Let us know how you get on x. 😊

Kazzie August 9, 2019 17:20

Thanks moo

DD does have an EHCP in place. The college were fantastic with their support last year but DD has been engaging with some extremely dodgy people which has led to a child protection plan being put in place due to ineffective mental health care. The college are wary of putting her on courses which involve placements or those that she has access to equipment with which she could self harm.

I feel that if she had a proper care plan in place that acknowledges the ASD she would be able to move on but it's knowing where to go to access that support.

Safia August 9, 2019 17:33

In our area you can self refer to the adult learning disabilities team - there is a form on their website - so look into that. Their criteria are very strict though and their cut off point for cognitive levels / IQ here is 70 - my AD’s is 73 - at that point she didn’t have any specific additional diagnoses though which she now does. So that may help - I will try again eventually. As your AD is particularly vulnerable as you say you can also use that - we had SW assessment due to that but unfortunately was useless as she just recommended youth activities etc. Also make sure you spell out things in black and white - when asked if she could do things like make a cup of tea I just said yes instead of saying she can but she doesn’t. Also in our area there is a college specially for people with autism and local support groups etc. If you have an adult autism service in your area they may be able to help with info. Adult services can sometimes be better than children’s. Also NAS as someone suggested. Good luck - and well done for finally getting the diagnosis - it’s a struggle!

aquilegia August 9, 2019 17:36

Have you asked for an emergency review of her EHC? If her education, health or care needs have changed you can do this. Get all professionals together to put in place a better support plan. Maybe your daughter needs an amended plan with more support so she can attend placements. Sorry, things sound like they have been tough.

Kazzie August 9, 2019 20:55

Thanks for all the advice. Will ring the SEND team at the LA next week about a review of her plan. They've been really helpful in the past. School was a nightmare and we were hoping that she was settling down at college until things started escalating with her mental health around last Christmas leading to the child protection plan being put in place in June.

Milly August 11, 2019 07:27

Hi Kazzie. I am interested to read your post though I don't think I can be any help unfortunately. Our dd is a year older than yours. She has an EHCP too and diagnosis of ADHD. We've never pursued ASD ( I'm appalled it took 3 years to diagnosis your dd!) though she does have social / communication difficulties. I think she may well be on the FASD spectrum.

In her first year at college she did a course requiring practical placements. The college wouldn't let her do them although she had TA support for all in-college sessions. The argument was that she had to be able to do them independently and they didn't trust her. At the time she was having panic attacks and volatile relationships with peers. We weren't happy but dd showed very little interest in her course anyway. At the end of the year they suggested she change course- she wouldn't choose a new one so we chose one for her we thought she'd like. This year she has been much more stable and got on better with peers- no incidents really.

However she didn't like the course (though she attended) and has no idea what she'd like to do, so we have decided college isn't the way to go at the moment. On the plus side, her mental health is not an issue at the moment, her peer relationships have improved and she's a lot more mature than a year ago. What we have realised though is that now she's at the end of compulsory education, even having an EHCP doesn't give us a strong bargaining position (she did consider another course but the college refused to let her do it as it involved practical placements).

Good luck - perhaps you'll find your dd will begin to settle next year? We felt that even with the issues, college in her first year was much better for dd than school had been.

Lettice August 12, 2019 12:45

My DD was in a similar situation at around that age and we found it very difficult. She wasn't diagnosed with autism until 18, due to other complex issues when she was younger and then a long waiting list followed by a long assessment.

In the transition to adult services, the problem was that they are divided in our area into two completely separate teams for 'learning difficulties' OR 'mental health'. The LD team had a specific IQ cut-off, as Safia mentioned above, but someone was able to bend the rules to accept equivalent SpLD in the short term. As she turned 18, keeping her safe relied on capacity assessments which are fraught with difficulty in any case, but made worse because they need to be on the basis of either the LD or the MH. Plenty of the professionals that we worked with recognised the idiocy of the system, but there was little they could do - lots of vulnerable young people all caught in the same trap.

We haven't had much luck with the local ASD group. There are some good activities but the inevitable personality clashes were adding too much extra drama.....

Education-wise we muddled through two iterations of level 1 college followed by two years at a specialist unit.

So overall I don't think there was any systematic, formal help to be had in our area during those transition years. But we found some brilliant supportive individual people, by chance, within the various systems, so we weren't completely on our own either.

BeckyAUK August 13, 2019 14:36

Sorry to butt in here, but I wonder if you have all seen this thread:

I'm starting some research into experiences of accessing education post-16 and am looking for adoptive parents and adopted young people who would be willing to chat to me in an informal interview. I realise that some young people are not in a place where they are up for this sort of thing, but I thought I'd mention it anyway just in case. Thanks.


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