Diagnosis - now what ?

[Mirabelle]

DD(12) has now been diagnosed with Dyspraxia and 'on the autistic spectrum' (AS to you and me), by CAHMS who are now 'closing their files'. Is that it ? Is it now down to us alone to make the best of it ?

[bluefish]

When ds was dx at 3 and half I was told "the only thing I can garantee is that he wil grow taller" then that was it.... nothing more!

[JsMum]

 

 

 

National Autistic Society may have spersific courses and seminars that maybe of an interest to you, also they will send you information on AS and relivant information to your local area, things to look into are.

 

Local parent support groups.

 

Spersific activities designed for AS children

 

Assessment of his needs and you as a carer via your local authority council, ie social services.

 

Assessment will look into what support your son will need via the community.

 

So sessional worker, sport groups, respite ect....

 

You may choose to look at what support he requires at school so an assessment of special educational needs.

 

National Autistic Society and Contact A Family have booklets and leaflets on what support there is for children with AS and other information on Disability Living Allowance and Carers Allowance.

 

If you feel your son also needs further support from CAMHS then you can request further support.

 

My son was discharged not long after he started a Residential specialist school because he has access to therapists and proffessionals there.

 

What support would you like to recieve from CAMhS.

 

JsMumxxx

 

 

 

 

 

 

[trekster]

DD(12) has now been diagnosed with Dyspraxia and 'on the autistic spectrum' (AS to you and me), by CAHMS who are now 'closing their files'. Is that it ? Is it now down to us alone to make the best of it ?

 

Thats disgusting that they arent offering any long term help. You would think that with dyspraxia they would at least offer occupational therapy.

They are trying to save money and fob you off since your son daughter has something incurable.

 

Alexis

[Mirabelle]

Thanks respondees.

 

We were offered details of a local group where we could chat to other parents in similar situations, but - aside from not being able to leave DD to attend even if we wanted to - nothing of concrete help.

 

The school have been very good, it was they who pointed us in the direction of AS to start with last year.

 

DD is quite independent/mildly affected relatively speaking, she goes out by helself and with friends, so there's no way we'd qualify for DLA for example, but she needs a great deal of gentle propping up all the time - that she doesn't realise that she's getting, as she won't accept she's got any sort of condition yet. When everything is going fine, she's fine, but when it doesn't or when something just isn't to her liking is when you see the extreme reaction to the situation.

 

Oh well, we've made the best of it so far and we'll just carry on doing that.

[JsMum]

Thanks respondees.

 

We were offered details of a local group where we could chat to other parents in similar situations, but - aside from not being able to leave DD to attend even if we wanted to - nothing of concrete help.

 

The school have been very good, it was they who pointed us in the direction of AS to start with last year.

 

DD is quite independent/mildly affected relatively speaking, she goes out by helself and with friends, so there's no way we'd qualify for DLA for example, but she needs a great deal of gentle propping up all the time - that she doesn't realise that she's getting, as she won't accept she's got any sort of condition yet. When everything is going fine, she's fine, but when it doesn't or when something just isn't to her liking is when you see the extreme reaction to the situation.

 

Oh well, we've made the best of it so far and we'll just carry on doing that.

 

 

 

DLA: so when she is isnt fine does she still go out, how differently does she act, what are her extream reactions and what situations distress her?

 

You might be surprised that she still may well qualify for DLA as there is different levels, low, medium, high care and low, high mobility allawance.

 

I would still discuss DLA especially as she is recieving support at school, it doesnt go by dx but by needs.

 

Ask yourself these, do she need assistance, support with communication, litracey, socialising, supervision especially when her behaviour is extream, how is she supported to go out with her friends, picked up, dropped off, DLA supports social recreation and independance but many need a lot of support to actively take part in it.

 

Children with AS can have issues with diet, requires frequent reminders to do certain tasks, support in organisation skills, and a structured routine to help them feel safe and settled, there is maybe a lot that you do already that you didnt realise is because she has AS.

 

Contact A Family helpline can help you go throw the quieries you have about DLA.

http://www.cafamily.org.uk/families/rights...redits/dla.html

 

This benefit is for your daughter, it will be well in her rights to apply for it.

 

JsMumxxx

 

Edited December 23, 2009 by JsMum

[trekster]

DLA: so when she is isnt fine does she still go out, how differently does she act, what are her extream reactions and what situations distress her?

 

You might be surprised that she still may well qualify for DLA as there is different levels, low, medium, high care and low, high mobility allowance.

 

We didnt realise the extent of my disabilities until after being awarded disability benefits.

I would still discuss DLA especially as she is receiving support at school, it doesn't go by dx but by needs.

 

Same here since it isnt dependent on income and can entitle her to discounts on things like rail tickets (with a railcard) or coach tickets (if she meets the bus pass criterion), certain hotels (with a 3 year railcard) and other things in future.

Ask yourself these, does she need assistance, support with communication, literacy, socialising, supervision especially when her behaviour is extreme, how is she supported to go out with her friends, picked up, dropped off, DLA supports social recreation and independence but many need a lot of support to actively take part in it.

 

Better still get a copy of "taking responsibility" from NAS publications department for £8 (you can join as a member or she can join as an autistic member). There is a page called "practical support services" it could jog your memory as to what she could need help with. If she learns through "delayed imitation" then her difficulties will be masked by her ability to remember scripts for doing social things eg buying a drink in a cafe. If she always orders "a large latte with chocolate" in the same coffee shop as part of her routines, she could be thrown by "no lattes left sorry" or "we've only got small cups today". Her difficulties with communication would only come out when a memorised script was unable to be followed. i think that's why i was diagnosed as mild aspergers but many of my friends (all autistic i might add) think im anything but mild!

 

Think about how she handled getting into trouble at school. Or whether she missed out on events at school due to exclusion from "well meaning" individuals. Or how she handles sports day, last day of school (i ended up not going in on that day since i couldn't cope with the "fun" part of school). Trips out i was told to either attend a really scary film or stay and do lines! i ended up having a severe panic due to a treat i was forced into attending! Check out her school reports and see how she differs from her non autistic peers. i know this sounds harsh and is hard to do but if it gets you the ability to do something with your daughter she could miss out on it's worth mentioning everything she has problems with. Im quite naive and was easily taken advantage of in school now im almost the opposite but trying very hard NOT to go into paranoia. i know i can trust certain friends with anything sciencegeek being one of them

Children with AS can have issues with diet, requires frequent reminders to do certain tasks, support in organisation skills, and a structured routine to help them feel safe and settled, there is maybe a lot that you do already that you didn't realise is because she has AS.

 

Maybe the book "adolescence and asperger syndrome" could help you fill in the forms as well?

Contact A Family helpline can help you go throw the queries you have about DLA.

http://www.cafamily.org.uk/families/rights...redits/dla.html

 

This benefit is for your daughter, it will be well in her rights to apply for it.

 

JsMumxxx

 

i think you can apply if your daughter refuses to accept her diagnosis as well? We got an excellent benefits pack from the NAS and started with DLA then applied for other benefits. So apply for DLA, then once it's awarded apply for ESA (when shes over 16) and income support (not sure if you can get them for under 16s?) at the same time.

 

Also if one member of your family or more gets DLA you can apply for "second adult rebate" on your council tax! ie telling the council tax people that a disabled individual is living with you is well worth it.

 

Alexis