Help for autistic but undiagnosed grandchild

Bradburt

My 10 year old grandson has just started his diagnosis journey although we all suspect there is little doubt that he is autistic. His parents are struggling but their GP has said they cannot get any help until his formal diagnosis which is likely to take up to 2 years! He will start secondary school next year and they are concerned for his well being, as well as his behaviour towards his younger sister. Where can they get interim support and guidance please?

Jimm_Alumni

Hi @Bradburt, welcome to the community 😊 I hope you're having a lovely day today. The waitlists are so long for the assessments aren't they.

About the school and help. This isn't a subject I know much about myself, but we do have an advice page on what you can do and what help is available even without diagnosis:

Support for a child without a diagnosis | Disability charity Scope UK

I hope this helps!

WhatThe

The National Autistic Society (NAS)

Jimm, do you have the links please?

Rachel_Scope

Hi @Bradburt. My background is working in primary schools with SEN children. Have the parents discussed his possible autism with the school? Ideally, the school should have had their SENCO involved if they suspected the child may have an additional need. Wait times for assessments are very long and I understand it's frustrating.

The first step would be to ask the parents if they have been in contact with your grandson's primary school about his autism. If so, this information should have been passed on to the secondary school so they will be aware and could put some support in place. The support is not guaranteed until there is a diagnosis however.

The https://www.autism.org.uk/ would be able to give you more tailored advice.

Hope that helps a bit. Any questions just ask 😊

Sandy_123

My grandson is on the waiting list he's 6 their GP said it could be another 2 to 3 years yet. He gets support at school with schooling, but they don't get any help with how to deal with things, just left to wait

Bradburt

Thanks Sandy, appreciate your reply. Yes, it's the helplessness dealing with the aggressive behaviour in the correct way for a neurodiverse child. Not knowing if you're helping or causing more harm with each approach you try. Appreciate that's standard in parenting, but being left unguided for 2 to 3 years isn't acceptable really.

Becky_Scope

Hi @Bradburt Thank you for your post. There is advice and support available for families whose children don't yet have a diagnosis. Regarding your grandson's behaviour towards, his sister, may I suggest having a look at https://www.sibs.org.uk/supporting-young-siblings/parents/ ? They have lots of good information about how to explain his needs to his sister and to help her feel supported too.

It may be that he has specific sensory needs that he can only communicate through his behaviour. By looking into his sensory needs and recognising how they affect him, you can then look into appropriate strategies to support him so it reduces any unwanted behaviours. https://www.autism.org.uk/advice-and-guidance/topics/sensory-differences/sensory-differences/all-audiences has some starter information.

If this is all affecting you as a family, his parent(s) can apply for Early Help support in their local authority. Early Help should be able to signpost them to any relevant support in their area.

SOS!SEN can provide advice about support he is entitled to in education. Your local SENDIASS service should also be able to advise.