Undiagnosed autism

[Dexterina12]

Hi everyone I'm posting here because I just don't know what else I can do.

My 7 year old son is on the social communication pathway to be assessed for autism. It's looking like it will take atleast another 2 years. I've taken him out of school because he just can't cope with it at all so now we are home educating. Is there anywhere you can get help for children who are undiagnosed? I have searched every which way possible on Google and I cant find anything. You have to be diagnosed to get help. Any advice would be massively appreciated!

 

[Justhereforthedrama]

If he is suffering could you go to CAMHS? Our daughter was really suffering, we went via doctor as she was saying alarming things, the referred to camhs, camhs said 'likely not mental health related, could be undiagnosed autism' and organised us an assessment with help from school SENCO (think there's a cross team approach to these things). She continued seeing the counsellor at school once a week, then had her assessment about a year later which gave a diagnosis.

I think what you have to understand is when you get a diagnosis, not much changes. The school can still provide the support they are currently giving, but more accommodations may be allowed. For example she was allowed movement breaks, to be able to leave the classroom when needed, to be able to go to the SENDCO room every lunchtime (as she didn't like the noise of the yard).

If things are severe enough they can get an EHCP, which is another battle. We have never bothered getting one for our child as shes coping well.

 

[My2pWorth]

What sort of help are you looking for? Your local council will have a local offer website with everything listed to do with your local area for Sen children such as schools, groups etc. The LA who help you with home ed can also point you in different directions. Have a look on Facebook for sen groups in your area. Is there a parent carer forum or Sendias team?
I too agree that a diagnosis changes nothing. In fact it makes you feel even more alone when you realise there's no additional help or support.
Unfortunately everything is a battle so expect lots of ups and downs. Don't even get me started about the Ehcp process, that is traumatic in itself.
But no matter what you'll find the strength even on days you feel like giving up

 

[Incywincy]

My (undiagnosed) daughter has never been to school. Primarily because we knew she'd struggle (and also because we realised there's a whole world out there to learn about and from).

I've just commented on a different autism thread but just wanted to say that a lot of families find that once their ND child is deregistered, a lot of difficulties become easier to manage because you can often make immediate changes to support them and potentially less "help" is required. (This doesn't mean they no longer have difficulties btw, just that your presence can help remove the barriers they'd ordinarily face because you can support and advocate. Nobody knows your child better than you, not even professionals).

The reality is, even with a diagnosis, and sometimes even with an EHCP, ND children often still really struggle in school. Hence why I know so many who deregister and then find things easier. The kids are no longer having to "pretend"/"cope" for significant parts of their day.

I know it's been a few months since your post but I really think the most valuable support you could find right now would be other home ed parents with ND children.