Autism diagnosis - what now?

[WhoAmI30]

What steps do you take after your child has been diagnosed with autism. Seems like diagnosed and then left to just crack on like you were before the diagnosis, no suggested next steps, no suggested help ideas, nothing. So figured best place to start was with people who have been in the same situation. Any advice or suggestions much appreciated.

That’s hard. In our area we were offered a lot of courses and information.

I’d say find a crew? Check out facebook / whatsapp for local SEN parents groups or ASD parents groups. It’s really nice to meet likeminded parents and kids for playdates and to swap tips.

Maybe follow some autism influencers on instagram. I also found this helpful, to see common behaviours and responses, get ideas for activities etc.

Do some reading if you feel like you need more info? I found ‘how to raise a happy autistic child’ and ‘the reason i jump’ really helpful.

Good luck x

Sadly, many DC are diagnosed and promptly discharged as you have found.

Although support is based on needs not diagnosis.

How old is DC?

Do you receive DLA?
Does DC have an EHCP? Are nursery/school providing any support?
Have you had social care assessments? A carer’s assessment for you and an assessment via the disabled children’s team for DC.

Has DC seen a SALT and OT? Portage depending on DC’s age?
Depending on needs think about applying for a blue badge.

Check to see if your area run an EarlyBird, Early Bird plus type course or cygnet course.

Have you got a copy of the assessment report, OP? Are you already talking to the SENCO?

I was handed a couple of information sheets and told that Ds wouldn't be seen again. Even though we had pleaded for help at the diagnosis appointment. The only advice the paediatrician gave us was to talk to him about Bill Gates (Ds was 15). At the time Ds had expressed feelings of no longer wanting to live and we were refused a referral to camhs.

The suggestions from dory are a good idea. Unfortunately you will have to search out (and probably push) for support.

If you let us know the age and what problems your DC faces practically we can probably make more suggestions.

I agree finding local parents is helpful. Try NAS (see if they have a local group, or if they run EarlyBird or EarlyBird+ courses near you if that's relevant to your child's age). Also Facebook groups can be helpful (try local SEN groups, not just autism specific). If you Google your local authority name and "Local Offer" you should get a page that tells you about any local groups or support run by your local authority (e.g. near me there are coffee mornings and also CAMHS runs some parenting talks etc.)

Twitter and Instagram can be great places to learn more. I'd start with people like Chris Bonnello (Autistic Not Weird), Pete Wharmby (Twitter), Purple Ella, Yo Samdy Sam. But again it really depends a lot on your DC's challenges (e.g. if they were non-speaking I'd probably recommend a different set like Tanya Melnyczuk on Twitter (@projectania) and Nurturing Neurodiversity on Facebook and Instagram (but that's mainly for parents of younger children, so again depends on your DC's age).

If he is at an age where he can also engage with the diagnosis then there are also some useful books and resources for kids I would recommend.

Scope also offer mentoring to parents whose DC have recently been diagnosed.

Thank yous, i will have a look at everything suggested.
She is 12.
A lot of her traits line up with asperger's.
Havent had contact from anywhere else other than the ndas team while doing her diagnosis.
No copy of her report or anything yet.
Didnt think dla would be available.
Shes already referred to the school counselling team before diagnosis but waiting list to be seen.
I think finding other mums with similar situations would be amazing, and if i could find local or even online that would be amazing for me and dd to be able to have contact with.
Just very daunting at first knowing the best things to do and read etc.

I think there are a couple of books that would be amazing for your daughter (obviously have a look first) - both by young autistic authors.

• "A Different Sort of Normal" by Abigail Balfe (graphic-novel style book about her experiences growing up - does mention some difficulties like bullying but overall very positive and non-pathologising). You can follow Abigail on Twitter at: twitter.com/abigailbalfe

• "A kind of spark" which is a novel by Elle McNicoll - the lead character is autistic as is one of her sisters. It made me cry quite a lot but in a good way. It shows positive and difficult family relationships (which all work out well in the end) and school relationships. I thought it was lovely. You can follow Elle on Twitter at: twitter.com/BooksandChokers

If your DD does have any problems with bullying there is also a good book by Dr Emily Lovegrove (who I believe is also autistic, but was already an expert on bullying before she got her Dx I think). twitter.com/TheBullyingDr

Chris Bonnello (who is an autistic former teacher) has some great blog articles on autism aimed at a young audience.
autisticnotweird.com/growing-up-autistic-advice-for-teenagers-with-asperger-syndrome-or-mild-autism/
autisticnotweird.com/advice-for-children/

And one about telling your child (though presumably she already knows having been to the assessments?)
autisticnotweird.com/when-should-i-tell-2020/

And one with advice for parents on how not to damage your child:
autisticnotweird.com/five-ways-to-damage/