New ASD diagnosis support

[Potnia]

DD was diagnosed over the summer. She already had ADHD diagnosed so it was hard to spot the ASD when she was younger. She’s just started year six and it pretty obvious now.

The report was a bit of a shock as they recommend she get a lot more support and I get an EHCP in place.

I could do with a handhold on how to get things sorted, EHCP and other support (I can’t see CAMHS helping as they are so stretched). Plus just understanding what it means and what we should be doing as parents. It’s hard as autism is so varied and girls present so differently. Are there any good websites or support groups that are recommended or types of other support we could try?

I would start by looking online for your local offer to see if there are any support groups near you.

For EHCP a advice you can contact your local SENDIASS service. There is also lots of great information about EHCPs on SOSSEN (they also do very helpful booklets that you can order), IPSEA and Sen Jungle.

With an EHCP you can either apply for one yourself, there should be a link on your local offer to do a parental application or you can get your school to do it for you. It's better to have your school onside if you can, but it is not necessary to get the application process going.

The main advice I would give with an EHCP is to never take no for an answer. At every stage of the process there is a right to appeal and you should use these of you have to.

How helpful your local authority are is really pot luck!

www.ipsea.org.uk/asking-for-an-ehc-needs-assessment

I second not taking no for an answer. At the point when you are asking for an assessment, all you need to show is that your child has or may have SEN and that he may need support through an EHCP. Over 90% of appeals against refusals of assessment go in favour of the parents.

Special Needs Jungle website has some really useful resources and flow-charts that guide you through the process of applying for and an EHC.

Thanks. I have a mental block, in denial and trying to figure out what it means for the future. Having to figure out secondary school is overwhelming and it would be good to get advice. All the pointers so far have been generic and non committal. I’ve seen the LA information on the EHCP so need to crack on and do it. The SENCO is bloody useless.

Are support groups/advisory bodies running at the moment? There’s a weekly meet on the LA website but presume it’s not running. There’s no update or Facebook page for example. And when I found one for ADHD the other kids were far more severely affected so I felt a bit of a fraud.

The SOS SEN helpline is running - 0208 538 3731. Also they've done some useful webinars which are still available as recordings.

This may be useful:

"The Spectrum Girl's Survival Guide: How to Grow Up Awesome and Autistic" by Siena Castellon, a 16 year old autistic girl.

It's available on Amazon, but for some reason it won't let me post the link.

it is so tough to get your head round @Potnia, I've been there. But ultimately it's a good thing because your DD is the same girl she's always been, nothing at all has changed, only this way you get to understand better what's going on. I thoroughly recommend IPSEAs EHCP pages they're great - along with SOS!SEN who do advice surgeries which were completely invaluable to us. The Autistic Girls Network and Colouring Outside the Lines are great Facebook groups where you'll find helpful advice as well as get to ask adult autistic women about their experiences. It's a journey, and this is just the beginning. Sending you and your DD lots of love xx

Also google Limpsfield Grange School in Surrey which is the only secondary state school in the country for autistic girls, they have some good info. Speak to the SENCOs of all your local secondaries and work out which would be the best fit for your daughter where they really understand and accommodate girls on the spectrum.