What do you do when an ASD assessment is refused? Starting secondary school, where do we go from here?

[Sjaybo]

Hi, wondering if anyone is or has been in the same boat. For years my husband and I have been working with our sons primary school SENCO to help with his social anxiety and struggles at school.

Our son is very bright, he loves maths and is a avid reader, he has always loved learning. His main struggles are social interaction. He doesn't know how to make friends, he has one friend at school, but even then he will appear rude at times, even though he doesn't intend to be that way. He hates crowded places and will avoid talking to people. He uses sarcasm CONSTANTLY and it can get him into trouble at times as it can appear inappropriate. He also has severe fears such as death, war and disease which can be distressing and hard to calm him down at times. I could go on with all the other "quirks" such as food textures, smells, emotional meltdowns, need for routine, takes thing literal, strong sense of right and wrong (even when he is wrong).... so basically after lots of meetings and the SENCO being convinced he has high functioning autism, we finally sent a referral application to CAHMs to have him assessed for ASD, however we got a response saying his needs do not meet their threshold and that they will not be assessing him.

My concern now is that he will be starting secondary school in September and I'm worried he is going to struggle and get worse, I just don't really know where I am supposed to go from here. Has anyone else's child had the same issues? were they ok when they started secondary school?

Apologies for the long post, thank you if anyone actually read it all.

It sounds like he clearly has ASD, however, it also sounds like the reason his diagnosis has been declined is because it isn't a barrier to learning. Therefore he won't need the academic support that comes from a diagnosis (TA support for example).

However, of course I agree that school isn't just about academic success and the social side is so important too.

I would speak to his secondary school Senco and pastoral support (head of year 7 for example) and explain the situation. Teachers can and do apply the same strategies to students without a formal diagnosis. I'm a teacher and I have ADHD students with no formal diagnosis - doesn't matter, we know their needs.

Otherwise you could maybe seek out a private assessment.

Wishing him well in Secondary.

The NHS are totally over run and just don’t have capacity to complete assessments for everyone that’s asking for one. They have to draw the line somewhere. Even if he is accepted for assessment, you’re likely to be waiting years for him to be seen. What are you hoping a diagnosis will change? He’s already having SENCO support and presumably you and the SENCO have been liaising with the secondary school regarding additional support? It doesn’t sound as though he would meet the threshold for an EHCP regardless of a diagnosis. If despite all of that you still want him to be assessed then there are lots of private assessors accessible. I’m a mental health nurse by the way.

Thanks for your reply. You are right, our NHS is on its knees at the moment, I also work for the NHS. I know a diagnosis will not be a magical fix all, we have had that exact discussion with the SEN who has been amazing throughout. I'll be honest it is more for my son, so he has an understanding of why he feels and thinks the way he does. He really struggles and feels different at times, it's hard to watch when he is feeling that way. Which is why I wanted him on the waiting list now before he potentially feels worse as he gets older and has to start the whole process again. Maybe that is selfish of me, as I know there are children and young people out there with much greater needs then his. I just want to do what's best for my child and arm him with all the resources I can to help him in life.

I know that the secondary school have been informed about everything, and they have said they have put things in place for him. I honestly was thinking further into the future for him, when he is older, doing exams, applying for jobs, relationships.

Also for the most part all his teachers have been brilliant, however his year 6 teacher, really pinned him as a naughty kid, he would get sent out of the class all the time for speaking out, fidgeting/chewing on his clothes/pencil or questioning things the teacher would say...all things that would really upset him when he got home.

I feel that if he had an actual diagnosis, teachers may be more aware of these types of behaviors and not see them as deliberately misbehaving if that makes sense.

It might be the case that he is absolutely fine at his new school. I hope he finds his way and enjoys secondary school. I'm hopeful that the staff will do their best...I'm sure they have met plenty of children with similar needs.

I'm hoping to find other parents with similar experiences to help me improve the way I can help my child.

I appreciate your response, thank you, and I will keep in mind a private assessment for the future.

I echo the advice of PP, speak to his new SENDCo. It is possible to be on the SEN register without a diagnosis, as long as your son's needs are impeding his progress (this can be social rather than academic). The school will have C&I input which might help your DS in the first instance. Good luck!

I have a 13 year old who has suspected autism and adhd. School referred him for an assessment but it was rejected so they tried again and it was accepted.

That's interesting to know, thank you.