Daughter just diagnosed with ASD at age 14

[pwag20]

Hi. I'm new to this forum having (after many years of suspecting) just received an ASD diagnosis for my daughter. We went through the whole assessment process many years ago when she was around 5 yrs of age only to be told back then that she couldn't have ASD as she was a girl! I've always thought differently though and 2 years ago pushed for another assessment. After being on the waiting list for over 18 months we got the diagnosis this week. She has also been diagnosed with severe expressive and receptive language disorder.

 

Whilst I am very relieved to get a diagnosis after all this time I'm now concerned about the future. She has so far not been educated sufficiently bearing in mind her difficulties although we were lucky enough to get a statement for her when she first started school. Her statement has just been reassessed and her support has been increased from 15 to 20 hours per week. She's in mainstream school.

 

My main worries now are come the school holidays when she has in the past attended childcare facilities in the form of fun/summer camps, whilst I'm at work this is going to be difficult if not impossible to find now. The fun camp she's attended for the past couple of years only takes children to age 14.

 

I just wondered if anyone else has experienced anything similar and how other working parents manage!?

 

Sorry this is so long - I hope you've managed to get to the end without getting bored!! Thanks. Paula )

[Mumble]

Hi and welcome to the forum

 

If you read around some of the threads here you're see that the 'girls don't have autism' thing crops up a fair bit There are quite a few adult females here who had late diagnoses (myself included) where this was one of the contributing reasons to not being diagnosed earlier.

 

I'm not a parent so don't know about holiday clubs from that perspective, however two thoughts I had:

1. Try the NAS and their Signpost thing (think that's what it's called? ) for local resources

2. At least for this year, could you contact the club she's been to before, explain the situation and see if they'd be able to make an exception and take her for at least another year? I don't know about your daughter but I and other autistics often appear younger - both looking and emotional reactions - than we are, so she may find she fits in better anyway, plus it's a 'known' thing to her. Worth trying I should think.

[pwag20]

Hi and welcome to the forum

 

If you read around some of the threads here you're see that the 'girls don't have autism' thing crops up a fair bit There are quite a few adult females here who had late diagnoses (myself included) where this was one of the contributing reasons to not being diagnosed earlier.

 

I'm not a parent so don't know about holiday clubs from that perspective, however two thoughts I had:

1. Try the NAS and their Signpost thing (think that's what it's called? ) for local resources

2. At least for this year, could you contact the club she's been to before, explain the situation and see if they'd be able to make an exception and take her for at least another year? I don't know about your daughter but I and other autistics often appear younger - both looking and emotional reactions - than we are, so she may find she fits in better anyway, plus it's a 'known' thing to her. Worth trying I should think.

 

Hi and thanks for this. I hope I'm replying right!!?

 

I did think it may be worth asking if they would take her again next year especially as she is known to them as she has been going for a couple of years. And yes, she is most definately very young for her age so fit's in well as most of the other children are much younger. It is certainly going to be my first port of call. The only thing I'm not sure of would be the legalities of it from their perspective but I won't know unless I ask.

 

Oh if only she had been diagnosed years ago - but I won't dwell on that. Will look to the future and hope that now we can access suitable services for her that we've not been able to before.

[emmasmum]

Hi there,

My daughter was also diagnosed last year aged 14! We were told when she was 7 that her eye contact was too good to have Aspergers!!

Re: playschemes can empathise totally. Although my daughter can now be left alone for parts of the day, my son (who has a rare chromosome disorder) can't and is 16!

 

Google The Childcare Act 2006 - your local authority has a duty to ensure there is sufficient childcare to enable parents to work or study - this includes up to age 19 for disabled children.

 

I'm challenging ours at the moment (the playscheme Matt went to this summer only goes to 16 so he won't be able to access it from next Easter) - hopefully they will come up with something!!

 

Have you applied for Disability Living Allowance? We applied for my daughter last year and it was awarded so worth a try.

 

HTH

 

Carol

[pwag20]

Hi there,

My daughter was also diagnosed last year aged 14! We were told when she was 7 that her eye contact was too good to have Aspergers!!

Re: playschemes can empathise totally. Although my daughter can now be left alone for parts of the day, my son (who has a rare chromosome disorder) can't and is 16!

 

Google The Childcare Act 2006 - your local authority has a duty to ensure there is sufficient childcare to enable parents to work or study - this includes up to age 19 for disabled children.

 

I'm challenging ours at the moment (the playscheme Matt went to this summer only goes to 16 so he won't be able to access it from next Easter) - hopefully they will come up with something!!

 

Have you applied for Disability Living Allowance? We applied for my daughter last year and it was awarded so worth a try.

 

HTH

 

Carol

 

Thanks for the info regarding the Childcare Act - I didn't know that existed! I will definately be checking that out. There MUST be (and if not really SHOULD be) facilities for older disabled children!

 

I have thankfully been getting DLA at the highest rate care and lowest rate mobility for many years. She was diagnosed with ADHD at age 5. Of course now I'm questioning if that was the right diagnosis then considering the ASD diagnosis now.

Edited September 24, 2010 by Kathryn
to fix quote

[Kathryn]

Welcome to the forum Paula.

 

My daughter was diagnosed with AS at 15 (she's now 21). She was never statemented as there was no clear evidence of what was going on, although she struggled all through school.

 

I didn't really work outside school hours while she was younger so I don't have much advice to offer on the chidcare issue - sorry. When she was out of school for a year just after her diagnosis, I made an arrangement with a good friend to come and look after her and keep her company a couple of days a week while I worked.

 

K x

[bonbons]

HI paula

 

Likewise, I'm afraid I don't have any answers with regards to your school holiday chid care issues, but just wanted to say 'hi', as my daughter is also 14, and has recently been placed on the autistic spectrum and is currently being assessed for aspergers syndrome. After a year of CAMHS, who insisted that she simply had behavioural problems despite my raising concerns about her obsessions, her high anxiety levels, her feelings of 'not fitting in' stemming back to childhood, and her social difficulties, a spell in a young persons psychiatric unit finally led the psychiatrist there to believe that there was something else going on, and she has her ADOS test coming up shortly. Did your daughter have her dx confirmed using ADOS? She cannot currently cope with mainstream school, and we are at the moment, going through the statementing process so that a more suitable, specialist school may be found which will be able to meet her needs more fully and help her reach her full potential.My local Camhs are definitely not used to seeing girls with aspergers!! What are your experiences? How does she cope at school?

 

Beverley. Cheshire.

[Karen A]

Hi Paula and Welcome to the Forum.

I have Ben who is 12 and has AS.

 

We have not used playschemes .I do not work but previously when we looked at provision for the holidays Ben always appeared to be placed within a grey area.There was huge busy unstructured provision that would have been too chaotic and specialist provision that was aimed at pupils within Speciaist Provision with ASD and learning disabilities neither of which were really appropriate for Ben who is very bright but likes structure and organisation in smaller groups.We live in Inner London.

 

There may be a few more options for next summer.London has ''Summer University'' which provides a vast number of oppurtunities to follow specific interests such as sport,ICT,cookery,media.I think there may be some courses that Ben might really enjoy.However all of these are for a few days and not full time and so may not solve your problem even if something similar is available in your area.

Karen.

Edited September 25, 2010 by Karen A

[pwag20]

HI paula

 

Likewise, I'm afraid I don't have any answers with regards to your school holiday chid care issues, but just wanted to say 'hi', as my daughter is also 14, and has recently been placed on the autistic spectrum and is currently being assessed for aspergers syndrome. After a year of CAMHS, who insisted that she simply had behavioural problems despite my raising concerns about her obsessions, her high anxiety levels, her feelings of 'not fitting in' stemming back to childhood, and her social difficulties, a spell in a young persons psychiatric unit finally led the psychiatrist there to believe that there was something else going on, and she has her ADOS test coming up shortly. Did your daughter have her dx confirmed using ADOS? She cannot currently cope with mainstream school, and we are at the moment, going through the statementing process so that a more suitable, specialist school may be found which will be able to meet her needs more fully and help her reach her full potential.My local Camhs are definitely not used to seeing girls with aspergers!! What are your experiences? How does she cope at school?

 

Beverley. Cheshire.

Hi Beverley

 

It's nice to come accross people with similar experiences. Sometimes you can feel so isolated and whilst I am lucky to have a great support network with family and friends they can never truly understand what it's like on a day to day basis.

 

Ashleigh was assessed via something called ADI-R (Autism Diagnostic Interview Revised)!?!! This together with many other meetings and assessments.

 

She's always been in mainstream school even though she was statemented when she first started school I always felt her primary and junior schools met her needs quite well and she got by. It wasn't until a couple of years into secondary school that as she got older her immaturities and communication difficulties became more apparent. In view of that I requested a statutory reassessment of her statement and her support was increased. Her current school think they can continue (?) to meet her needs and I think it may do more harm than good at this stage to consider placement in a special school. But it's always hard knowing whether or not you're doing the right thing. She does actually enjoy going to school even though she sadly is the victim of a fair bit of bullying often as a result of inappropriate behaviours she exhibits. I have regular meetings with school as any issues arise and they have altered her curriculum to take account of her limited abilities.

 

Good luck with your assessment and statutory assessment! I know how daunting it can all be. Thankfully I achieved what I set out to when I went into it all and I hope you do too.

 

Paula )

[pwag20]

Hi Paula and Welcome to the Forum.

I have Ben who is 12 and has AS.

 

We have not used playschemes .I do not work but previously when we looked at provision for the holidays Ben always appeared to be placed within a grey area.There was huge busy unstructured provision that would have been too chaotic and specialist provision that was aimed at pupils within Speciaist Provision with ASD and learning disabilities neither of which were really appropriate for Ben who is very bright but likes structure and organisation in smaller groups.We live in Inner London.

 

There may be a few more options for next summer.London has ''Summer University'' which provides a vast number of oppurtunities to follow specific interests such as sport,ICT,cookery,media.I think there may be some courses that Ben might really enjoy.However all of these are for a few days and not full time and so may not solve your problem even if something similar is available in your area.

Karen.

 

Hi Karen

 

Thanks for this! My Son is called Ben too - though he's 19 and at University. I think he's glad to be away from home now to get a break from his sister but I know he misses her too and she really misses him.

 

I've never heard of 'Summer University' in my area (I live in Kent). However, I'm not sure it would be suitable for Ashleigh from the sounds of it anyway. She is a very long way behind accademically. Recent assessments were at age 8 for spelling and 9 for reading. She was doing hospitality and catering at school last year but couldn't cope so her curriculum was altered and she does touch typing and 'units of sound' in it's place.

 

What she really needs is what she has done for the last couple of years by way of a fun camp where she swims and plays and dances with children who are on the whole much younger.

 

Thankfully I usually get by in the half term holidays by taking some annual leave and relying on friends and family but the 6 weeks summer holidays are a different thing altogether!

 

Thanks for help.

 

Paula

[pwag20]

Welcome to the forum Paula.

 

My daughter was diagnosed with AS at 15 (she's now 21). She was never statemented as there was no clear evidence of what was going on, although she struggled all through school.

 

I didn't really work outside school hours while she was younger so I don't have much advice to offer on the chidcare issue - sorry. When she was out of school for a year just after her diagnosis, I made an arrangement with a good friend to come and look after her and keep her company a couple of days a week while I worked.

 

K x

 

Hi Kathryn

 

Nice to hear from you. How is your daughter doing now? I do worry about the future and in particular the whole puberty thing which hasn't crept up on us yet but I'm sure it won't be too much further away. I have to say I'm dreading coping with that!!

 

Paula

[Kathryn]

Hi Paula,

 

I wish there was a simple answer to that! She's doing very well in many ways, struggling in others.

 

She's gained a lot of independence since 15, shops and cooks her own food and goes occasionally into London to see friends. She's a wonderful big sister - very protective of her brother and a pleasure to have around most of the time. However she's still struggling with the after effects of a messed up education and trying to catch up and gain the qualifications she never got at school. It's a tough old battle - a few challenges ahead this coming year, but we're keeping our fingers crossed she'll be heading off to university this time next year. Five years ago I didn't even think that was a possibility -there have been many ups and downs along the way - no doubt many more to come!

 

K x

[pwag20]

Kathryn

 

Your reply has given me some hope. Thank you

 

This has been some week for me. Initially relief followed by anger at not having an earlier diagnosis and for the past couple of days all I can do is cry!! I feel so silly - I am normally such a happy, positive person and rarely feel sorry for myself.

 

I'm seriously considering taking some parental leave from work just so I can really devote some time to exploring available services for both Ashleigh and me and to take a little bit of time out. The only problem is the fact that I won't get paid and could probably only afford to take a couple of weeks off and really feel I need more.

 

That said I'm sure tomorrow will bring a whole new set of emotions!??

 

Paula x

[Kathryn]

Hi Paula,

 

Glad to help.

 

I got a lot of encouragement from people here when I first joined and that gave me the strength to cope with everything. Feel free to pm me if you want more specific information. I don't tend to discuss my daughter in detail on the forum as she's now an adult and entitled to her privacy. Having said that, everything we went through over the last 6 years is well documented on the forum because I was always asking for help here. If you search for my topics under Education going back to '04 that would give you a flavour. I sometimes go back and look at them to remind myself how far we've come!

 

K x

Edited September 29, 2010 by Kathryn