Difficult

Well I had the phone call today regarding my son . Myself and my sons school felt that he was on the autistic spectrum. However the educational psychologist and paediatrician have come to the decision that they don't feel he is. After such a long time of waiting I am obviously disappointed with this result as I was hoping for a diagnosis and to get more support for him and our family . My son is 5 years old and will be 6 in July he has been diagnosed with a moderate general learning disability and this is what the consultant has put all of his behaviour down to. He had an assessment with the educational psychologist last year and she said that his full scale IQ score is 63. The school my son goes to is so supportive and the senco teacher was shocked that they didn't diagnose my son with autism . She will be asking the educational psychologist to come back to reassess my son once he is 6 and when schools can return .

Is there anything out there outside of school that can offer support with a child with a learning disability or am I limited with just support from school? I feel my son really does need extra support outside of the school setting as this is where my main struggle is with his behaviour. Any help or advice would be appreciated

[Gus56]

Hello

I am sorry to hear of your disappointment about a diagnosis of autism. As you and your SENCO will be aware, diagnosis of autism requires consideration of various particular criteria and professionals will be very cautious with such a young child. Whatever your child's diagnosis, I would hope that school will differentiate his learning as far as they can? I am sure another visit from the psychologist would be helpful to school and to yourself. If you meet with the psychologist they could discuss behavioural issues with you.

About your difficulties managing his behaviour outside of school, I am not sure how a diagnosis would help you ? Have you contacted MENCAP helpline, or found any useful advice on their website? Perhaps there is a local network of parents you could meet with and share experiences and advice?

With a child with a learning disability and autism I have found it helpful to try to understand things from their point of view, like what could be upsetting them and what helps them to feel safer. I know from my own son (now aged 34) how difficult it can be with a child with learning disabilities and I hope you find some support for your child and yourself.

[49Twister]

Hi check out if their is a local support group of parents of children with learning disabilities/ autism this would be a big help. You would feel your not alone and it’s invaluable the information and advice that is shared within these groups as after all the parents are the experts. As your son is quite young their will be parents with older children and more expertise which will be very useful I’m sure as these groups can be a hub of info. If you have a Carers Centre in your town they would be able to tell you if any groups in your area and also help with a lot of other issues you might have.

[Galwaybay2]

I really understand your need to have professionals fully understand your child. Without that official recognition a family can feel isolated and in battle and this adds anxiety to a family coming to terms with their new reality and even feelings of grief for some. Of course, professional recognition is part of the process of funding for education and other social support but it also supports families in feeling less marginalised and powerless. Labels are helpful in all this I think, there is a shorthand that goes with a named conditions that financial assessments understand but also in feeling that there are others out there like 'us.'

[Sarah_Mencap]

Hello

This must be difficult for you - particularly during lockdown.

There are some great replies on here and I agree with their suggestions.

> local parent groups - there is one near me and they are great. It is just a great chance to meet other families (or at least talk to them) that are in a similar situation. They are also likely to know about what support is available locally.

> local Mencap groups - search for one near you on here - mencap.org.uk/advice-and-su... Again, these are very tricky times as many of these groups won't be meeting at the moment. But they may still be catching up online and on the phone.

> do call our helpline if you want to talk to someone about this call 0808 808 1111

> if you want to challenge the support you are getting there is information on here - mencap.org.uk/advice-and-su...

Finally, I would echo the reply that says about taking care of yourself. There is likely to be a carers centre near you. They will be able to offer you support. Please do have a look.

Best wishes.

Sarah