What happens after autism diagnosis?

[layhazsoph]

My daughter is currently on the waiting list to be assessed - what happens after diagnosis is given?

If diagnosed you will get an outcome of the assessment including recommendations.
In our area that is it, there is no after support other than parental peer groups.

Nothing unfortunately.

My DD was given a formal diagnosis but we had suspected for years and help was already provided within the school (not 1-1 just extra support). It’s on her records for when she will need extra time for exams or help with medical procedures etc but after the diagnosis you are pretty much on your own.

We found a charity that did counselling for parents to help us get used to it.

I paid for private therapy for my dd

There was no help from any govt services

But I applied For pip and got it for 3 years so that's something

Time and rest and our dd is coming back to us and a meaning full life after the trauma of school.

It depends really. Sometimes nothing!

We were declined an assessment so I felt forced to go private. The assessment was helpful in showing there were some struggles in school and it really highlighted behaviours that were not intentionally disruptive. That's been helpful in asking for accomodation in school ( e.g movement breaks)

Best of all, my son really feels like he understands his quirkiness and difference now and happily tells people he's Autistic/ ADHD. It was a huge validation for me also. Plenty seem keen to blame parenting.

I see now how it is the absolute best thing to get kids diagnosed as young as possible so they can understand who they are and build a solid identity in that knowledge. My son loves to spot the other NDivergent kids and enjoys socialising with them and talking about their ' goofiness ' 😊

I got handed a leaflet.

Not sure about kids. My dd had been waiting over 2 years for her assessment.

But adults? Zero. I found out 5 years ago at 35.

Not much - we had 3 sessions with a psychologist that was helpful but it was ‘here you are, off you go!’ It’s been quite a challenge advocating for support at school as she doesn’t have an EHCP and there are many more children with much more complex and more importantly disruptive needs.

We got a detailed report and also a smaller report for school with recommendations of adjustments.

In our case, the school implemented them all and suggested other things they could do to help. They also helped with EHCP. There are support groups here although we've not used them. You can apply for dla or pip depending on your child's age.

My DD15 was diagnosed about a year ago, it took 2.5 years of seeing a paediatrician to get a diagnosis, and at the start we didn't even dream it would be ASD as she was masking, but it's come out over the years she's ASD amongst other things.
Since then doors can open at school, we were lucky as my DD hadn't been to school for 1.5 years at that point and was given external hone tutoring via the school at home and will be doing 5 GCSE's next year. School have been great to be honest but you may have to fight if she needs extra
Help
See if she needs an EHCP for school, you can also apply for disability living allowance which can be good for extra resources for your child (my child can't tolerate noise (really bad sensory processing disorder which is part and parcel of her ASD) so could buy decent headphones to noise cancel, lap top, art supplies and some private support from ASD related resources in our area
I did have to do a lot of that myself but hopefully you can speak to others in your area and see what's out there in your region

Sort of nothing. There wasn't lots of help or treatment..

But also sort of something. So for instance it gave me confidence in my parenting. I also went on a course led by the OT at the hospital which was great. The school had to accept it was autism, not bad parenting and started to listen.
I had evidence in form of a long report about all the difficulties which helped with disability access.
Some new schools, that required a diagnosis, became available.

The autistic person continues their very painful life. It's shit, I have to say.

Many years ago but got handed the report and told there was no support available and bye.

Nothing, generally. 6 weeks after the appointment, you’ll receive a letter stating they have got autism. If you’re lucky, you get a piece of paper with a list of websites to look at.

It is the same as all other significant life long diagnoses. You get referred so specialist services if needed, otherwise you get discharged back to primary care.

My dd 24 was diagnosed 15 years ago we got nothing, my ds 19 was diagnosed 12 years ago we got nothing, my dd 5 was diagnosed a year ago we got a leaflet and my youngest is on the asd pathway and I'm expecting another leaflet.

The NHS did discharge paperwork immediately after diagnosis given.

Ds was in nursery and already had a Sen plan and some funding.. School began process for ehcp.

We got an afternoon intro to autism session. . I joined local charity and a couple of Facebook pages.

@Geneticsbunny

get referred so specialist services

get discharged back to primary care

Well that is something!

"So" should be "to" obviously. Sorry I am not sure what your point is?

We got sent a letter with the diagnosis and a link to the National Autistic Society website on it.

Sorry probably should have @CatMumSlave in my previous post so I can work out what she means?

I work for large city CAMHS in ND as an administrator. After diagnosis the report is sent with links to various organisations and support groups. If ADHD is diagnosed then they have the option to be put on the medication waiting list.
Our waiting list is currently 4 years but it's not moving for routine waiters! We have a limited capacity for assessments and are currently only seeing priority cases (those with significant risk). If things don't change families on the waiting list could be waiting for much, much longer than 4 years.

Just to add to this, DD has been given melatonin too to help with dreadful sleep. She gets CAMHS support for anxiety too and distress tolerance
I think you should consider what needs she has and then go out and get help for this. I've had to be quite pushy, but have seen paediatric psychiatrists, a CAMHS specialist nurse to help with anxiety and tics (DD also has Tourette's syndrome. I work with medics and they say you have to push for the support you need. Have a list of those things and tick them off as you start to get that help
Good luck

My daughter was diagnosed a year ago age 8, we waited 1.5 years on the waiting list due to post-covid catch up. I have to say having a diagnosis has been incredibly helpful. First and foremost it has helped me to understand her better as I contacted the National Autistic Society and have done a number of their online courses which were very informative and gave me a greater understanding of autism.
Her neuro development consultant has been exceptionally helpful, wrote a fantastic clinic letter outlining my daughter's particular struggles and suggested applying for DLA (which we were awarded - she also has epilepsy which affects her daily as well).
She is on 6 monthly appointments with her neuro development consultant at present though I'm sure that will change to longer eventually.
She also referred her to CAHMS for anxiety and SLT for selective mutism and she is having regular sessions with a psychotherapist.
My DD is also now going through assessment for an EHCP, applied for by school. I know you don't need a diagnosis to apply for EHCP but in my opinion it has given a bit more weight to evidence her needs.
I feel that we have been incredibly fortunate from reading some of the other responses.
I have been very proactive in doing my own research as well so that I know what to ask about and what services we can access.
There are lots of great websites I found through Google searches that are relevant to the area in which we live, as I believe different boroughs will have their own networks. Ditto for local Facebook pages for SEN.
Can't recommend our local branch of the NAS enough, if only for the courses they provide. They also have an out of hours helpline but I have not had to use this so can't comment on how useful it is.
Good to hear that school are already putting some help in place. I definitely felt like although school were supportive beforehand, the official diagnosis helped galvanise their efforts into applying for an EHCP.
Good luck with your daughter's assessment, my daughter definitely benefited from her diagnosis.