Newly diagnosed ASD and feeling overwhelmed- now what?

[pinkneonstars]

My beautiful DS4 received his official autism diagnosis yesterday. While it was not a shock, it’s hit me really hard…especially coupled with a spike in challenging behaviours over the past few weeks (screaming as a stim, increased aggression when told no, poor sleep)

The child dev team who diagnosed him were really detached and dismissive. I asked what support there is now and it was “there’s no post-diagnostic support” as they ushered me out the door in tears. They’re going to email me a leaflet in about a fortnight’s time and mentioned I can go on a parenting course but it’s during working hours.

He is functionally non-verbal (although potentially is showing the beginnings of developing functional language beyond scripting, babbling, single word labelling and screaming). He attends a mainstream nursery and is really struggling - we’ll be applying for an EHCP but, obviously, an application doesn’t mean he’ll actually get one. His behaviour at school is largely ok, sensory seeking, doesn’t join in really but not disruptive… their main concerns are about elopement and keeping him safe. The paed told me “they have to work extra hard at school to keep an eye on him so he doesn’t escape… it’s really hard for them you know, how are they supposed to manage that?” - which I just quite simply didn’t have an answer for. I have no idea how he’ll cope in mainstream reception next year and I know that there’s very little chance he’ll get into the already oversubscribed sen schools in my area.

I’ve had to give up my career and get a part time job where I can wfh as wraparound and holiday clubs won’t take him without a 1:1 which I have to find and pay myself (if I had a 1:1, I wouldn’t need a bloody holiday club, would I!?) Work are pretty flexible but this parenting course would be 2 hours a week (plus travel time) for 10 weeks and there’s no way I can have that much time off.

l’m just feeling lost and sad and isolated and I just don’t know what to do next. I don’t even know what the point of this post is, I’m just so overwhelmed and just desperate for some reassurance I can help him and things will be ok (which I know no one can give me). I just don’t know how we’re supposed to go on like this. How can I help him when there are literally no services? How can I tackle the behaviours with no more guidance and support post-diagnosis than I had before? What am I supposed to do now?

I am sorry to hear you had such an unsupportive experience.

I’m sorry you aren’t receiving the support you need.

Scope offer mentoring to parents of DC recently diagnosed.

If the LA refuse to assess, refuse to issue or don’t name your preferred school you should appeal. Getting a special school is possible. You may have to appeal, but on its own being full isn’t a reason for the LA to refuse to name them. IPSEA has a model letter on their website that you can use to request an EHCNA.

In the meantime, is the nursery providing support? Have they applied for early years inclusion funding? Have they requested advice from the specialist teaching service?

You can request social care assessments. A carer’s assessment for you and an assessment via the disabled children’s team for DS. Contact have model letter you can use.

If you post more about the behaviours you would like support with someone on here may have suggestions. This booklet and this website are good starting points for sensory needs.

A functionally non-verbal, aggressive child who elopes from.nursery is absolutely eligible for an EHCP, and for DLA and almost certainly for special school.

Getting there will be a horrible process that involves describing your wonderful, kind, clever complicated child in sentences like the one above.

And appealing when you get turned down for a needs assessment. Which you probably will, but then parents win over 90% of appeals.

It'll help if you can bring in professionals to write reports on him - that costs money (which is where DLA is useful) and means reading grim assessments of your child.

It'll also help to find your tribe. Here is a good place, and social media is full of local groups - just google 'where I live' autism and facebook.

There is a possible future where your kid is happy and supported and learning and you have friends who understand and can help.

It's just a bugger to get there - and you need to forget the idea that the system is set up to help.

There are a lot of individuals who are pure gold and will do everything they can to help, but after 14 years of Tory underfunding the system is broken and LAs are trying everything they can to cut costs, because they're all going bankrupt.

One last thing - it is excellent that your kid is being aggressive and running away and generally being a headache. Those are the kids that get help (if their parents work for it). The kids I really worry about are the quiet well behaved ones who internalise everything and then crack.

Actually - two more things. Explosive Child book can be life changing - it was for us. And Hanen's speech books might also be useful.

I don't want to type some patronising shit like 'you got this', but look - you're articulate and able to ask for help. You are in a really strong position to advocate for your kid.

Sounds similar to my situation when we received the diagnoses 4 years ago. My DS started nursery and we applied for an EHCP which eventually came through when he started Year 1. There was a delay because of Covid and the closedowns of schools. Once he got his EHCP, he started making progress with a 1-1 assistant. The struggle we've had is that his 1-1 changes every now and then and sometimes we got a good one that he connected with, and others that he failed to bond with which led to behavioural problems at school. You have to hope he gets a good 1-1 or perhaps start looking at mainstream schools that have a specialist provision, or perhaps start looking at special schools. Good luck.