Waiting for an autism assessment

[KayVess]

I’m not sure what I’m looking. For here really, other than some support I guess. My youngest is currently in the waiting list for an Autism assessment referred by my GP on right to choose. I submitted paperwork last week, which was some of the hardest work I’ve ever had to do.

We’re looking at a wait of 12-16 months, which based on news stories I’ve read is actually quite short.

I know there is little else I can do between now and an assessment date (other than support him as we have been doing and push the school to complete their forms) so I feel a bit lost now during this hiatus.

We’re very fortunate in that he is very academic, bright, articulate etc so as long as we get him into school he does great. His issues are more around routine, social skills, dealing with change etc and his primary school are supportive.

Perhaps what I’m looking for are other people in a similar boat to talk to. None of my friends are in this position and it’s hard to talk about it. They have a “well if he’s doing well at school what’s the problem” sort of vibe.

Make sure you're still pushing his school to make adjustments and offer support - their obligations do not depend on a diagnosis, but on needs, and from what you say, should include social skills support.

Thanks @LimeSqueezer to be fair, I have zero issues with his primary school. They have gone out of their way to support him to access school in ways that work for him including getting some workbooks in specifically to deal with his social anxiety. It’s high school in a couple of years I really worry about.

There may be support groups locally you can meet people at. For example, sometimes the parent carer forum will run sessions/groups or be able to signpost to services that do.

We have a Goose and Carrot Pub thread on SN Chat if you would like to join us. We all have DC of various ages with varying needs.

Scope offer mentoring to parents of DC undergoing assessment if that is something you would be interested in.

Have you considered requesting an EHCNA?

Thanks @BrightYellowTrain i will check out the thread. I had thought and EHCNA was only going to be worth it if my child wasn’t progressing well at school, and as mine is excelling academically speaking I had assumed that he wouldn’t be suitable. Very happy to be corrected.

I did t know about scope, that’s really interesting, and I will check out Local options. I sometimes feel a bit of a fraud as I know lots of families have much harder struggles than we do and I’m very fortunate I’m not worried about his future academically.

EHCPs are about more than academic ability. They are also relevant to things like social difficulties and anxiety. And ‘so as long as we get him into school he does great’ suggests DS struggles with attending?

You spotted that one. I think I’m hearing the voice of experience. Yes, getting over threshold and into school has been one of the hardest things to deal with. He hates that part where he leaves “home” and enters “school”. Last year we were on the edge of total refusal but, thanks to a proactive head and a great class teacher, we put some adjustments in place which seem to be helping. Although I kept him of on Halloween dress up as he was on the verge of total panic at the thought.

Are evenings after school difficult for DS?

I have 2 academically able DS’s with EHCPs. Both receive EOTAS (education otherwise than at school) now, but both have been in school previously and struggled with non-attendance related to their additional needs. It was ultimately driven by unmet needs, even though the schools were supportive.

What support is the school providing? If school was easier, you would probably find the transition into school in the morning improves.

Evenings are ok as long as we don’t overdo it so we limit clubs to cubs, but he’s usually fine now school have provided some accommodation.

At school he has loads of flexibility around break etc, so he can choose to read quietly indoors if he’s having a hard day. He has desk space both in the classroom and just outside the classroom that is separate from the other kids when he needs a break, but they also keep a space open for him at his usual table so he can sit with his peers when he chooses. We go in 5/10 mins after everyone else so he’s not in the cloakroom in a huge crowd.

They’re all small things, but add them together and school have really helped make the environment the best they can for him.

I worry for senior school as I doubt that flexibility will be there in our comp. His sister goes there already so I am going to preemptively speak to the SEND coordinator this year before we make his high school applications.

It sounds like you are naturally adapting to DS’s after-school restraint collapse.

Some other ideas of adjustments that may help are:
-Ear defenders/noise cancelling headphones.
-Someone to meet DS each morning. Not always possible without an EHCP but it is worth asking. Preferably the same person but not always possible especially without an EHCP.
-Leaving 5 mins early at the end of the day to avoid the rush.
-Proper movement breaks to prevent DS becoming dysregulated rather than waiting until DS feels he has to leave the classroom.
-Does DS find eating at lunchtime difficult? If so, eating somewhere quieter.
-Does the school have anyone who can support things like Lego therapy, drawing and talking intervention, nurture group, Zones of Regulation? Do they have a lunchtime club for those who struggle on the playground &/or with social difficulties rather than DS being singled out - if done right, it can also be a good way to work of social difficulties in a more gentle setting.
-Looking at the placement within the classroom. So DS’s seat at the table with his group, is his seat towards the outside of the classroom (nearest either the window or door depending on DS’s needs) rather than in the middle of the classroom where it is busier? Have they considered if front or back of the class would work better? Have they considered who else is on the table?

These are really great ideas, thank/ so much for taking the time to reply.

We’re at a small rural school so small staff, which definitely helps in many ways but also means certain limitations. We don’t have lunchtime club or space for a calm room for example we just don’t have the staff or the space.

Lunchtime is the one bit we haven’t really cracked yet. He eats the are minimum at school and I give him a big breakfast and a big healthy meal each night.

I have tried to suggest ear defenders / loop ear plugs but he’s very self conscious about standing out and being different which doesn’t help matters!

Speak to the school about lunchtime. Both the eating and also the playtime.

Ask if they will start a lunchtime club for those who struggle with the playground. Even in a small school, there will be other children who would benefit from this provision. To begin with, DS may ‘just’ read like he currently is. That is fine. Once he is more comfortable in the group, you/the school can then work towards supporting social interaction some of the time.

Eating wise, ask for somewhere quieter to eat, e.g. an office or classroom. If the school has rules about what DC can take in their packed lunch and DS would eat something he isn’t supposed to take, ask for them to make a reasonable adjustment. It is more important DS eat something at lunchtime. Otherwise, that won’t be helping in class in the afternoon - not just academically and with concentration, but with emotional regulation too.