Child with undiagnosed severe learning disability

PurpleDiamond

Hello all.

I'm new here.

I have a 10-year-old daughter who's autistic and has a severe learning disability.

I'm struggling to get a learning disability diagnosis for her when her disability is 100% obvious.

I'm looking for advise about getting a diagnosis for my daughter, please.

My daughter was diagnosed with autism when she was approximately 4-years-old. At that stage the paediatrician stated that my daughter also seemed to have developmental delay. Now that she is 10-years-old, it is very obvious that she has a severe learning disability. However, I am now struggling to get my daughter's learning disability diagnosed and I simply can't understand what to do. My daughter's learning disability is not ambiguous, she is completely dependant on adults to help her with everyday activities including socialising, she is non-verbal, she will never learn to read or write, the list goes on. There's no ambiguity in her disability. My daughter isn't just autistic, she's autistic with a learning disability.

I've approached my GP who then contacted me to say that I should approach the school instead for a diagnosis, and then the special needs school my child attends, stated that this isn't something they do. I don't know what to do and feel as if they are both lying to me so that no one has to do anything.

A learning disability diagnosis will mean that my child gets the right support for her needs as well as deal with matters of mental capacity and consent. I don't know who else to turn to and don't know what to do next.

Has anyone had their child diagnosed later on in life rather than at birth or toddler years?

Any advise or suggestions is most welcome and sincerely appreciated.

Mary_Scope

Hi @PurpleDiamond and a warm welcome to the community from me!

Thank you for telling us a little bit about your situation, it sounds like you're doing everything you can to support your daughter.

If your GP and school are refusing to help then it may be worth reaching out to your local Community Child Development Team (this is often found on your local council website) or mentioning a referral to Children And Adolescent Mental Health Service (CAMHS) to another professional that's involved in your daughters care. CAMHS may be able to assess and diagnose your daughter and offer support.

You can also contact your local council’s Special Educational Needs and Disabilities (SEND) team who may be able to give specific information on who is responsible for what, again this should either be on your local council website or in your local offer.

It also may be worth reaching out Mencap as they have a learning disability helpline and email support that parents can access for information and support.

Lots of children and even adults are diagnosed with a learning disability later than toddler years, particularly when the initial focus is on autism so you’re definitely not alone in this. I know we've got quite a lot of parents on this community that may be able to relate so hopefully some of them will reach out soon and share their experience and offer some peer support.

Hope this was helpful, please reach out if you have any questions or would like further support😄

durhamjaide2001

I'm afraid there is going to be a long wait because I started my diagnosis process when I was 10 and it took me 8 years I only got my diagnosis when I was 18

PurpleDiamond

Many thanks for your replies. They were most helpful. 🙏