Advice needed

Thank you so much, these are really practical suggestions. He definitely struggles if I ask something unexpectedly, so I need to think about that before I ask. 

Because these behaviours have slowly come out more and more over the last eighteen months and there has been quite a lot of masking, I have a lot of learning to do about his triggers.

We’ve been working with the school a lot over the last few years. They have made a lot of changes and adapted things for him. The SENCO helped us get an EHCP which will be vital for high school. 

thanks so much for your response ‘ 

Thank you so much for your kind words and offer of help. 
There doesn’t seem to be any National Autistic Society support group near us. There is one that is for children experiencing emotional and mental health difficulties, which we have attended, and I know we could go back there.

Ive checked all the links we have been given and there is hardly any groups running in our area that I could take him to, at least at the moment. I will keep looking. 

you are right, the transition of high school is looming ahead. But at this point I don’t even know if we will get him in a mainstream school. Even though with the right support he would be well capable as academically he is very bright. 

He is currently on a part time timetable at primary. And we are working to get him to stay at school for full days. We will definitely take him round schools so he can see what it’s like. We’ve already had a meeting with the SENCO at the high school we would like him to go to. Just not sure how everything will pan out really. 

thanks so much for your help 

Yes, that’s correct we are waiting for the ASD assessment. We self referred July 2022 as the school recommended.

I think he’s trying to figure it all out and perhaps that’s why he’s struggling more at the moment.

I would never expect him to conform to the way the world is, get him to think differently or try to cure the autism. I just want to know how I can best support him, which I guess I thought mental health therapies would help with that. But you’re right, it’s the people around him that need to adapt. Including us! 

It is good that school have suggested a referral as they should be able to work with you to find suitable adjustments to help him. If they are already aware you should not need to wait for a diagnosis to get help.

It is helpful to try to work out what may have been difficult to cope with before a meltdown. Was it asking him to do something different without warning? Are there particular situations he finds difficult like busy places, not knowing what to do, strong smells, bright lights? If you haven't done this, at an appropriate time after a meltdown whilst you are doing something, for my son it might be whilst traveling in the car, ask about what was difficult, perhaps suggesting possible reasons in case he is not sure.

My son found things more difficult around 10 as a lot of things were changing at school. Transitions may be particularly hard. If he is changing schools this year, ask about extra visits if they would help, as much visual as possible about where he is going and speak to the SENCO about anything that might help him at school. For my son who started getting help at Secondary before his diagnosis the SENCO has been very important. She is able to ask other staff to make reasonable adjustments to help him, even regarding clothing where he has high sensitivity.

NAS86454 said:

We have to wait on the assessment. Although I imagine even if/when he gets diagnosed it’s not going to change anything. We just have to try to learn how to parent an autistic child and it seems the internet is the only way to do that! 

By wait I assume you mean you are on a waiting list for an assessment?

I think you might need to shift your point of view. Therapy can help with the mental health issues caused by the autistic mind rubbing against a society that doesn't understand it. But it can't 'cure' autism or reduce autistic traits.

Now he knows he's autistic the things he wrote off as coincidences or bad luck he's now probably labelling as autism. You've heard the phrase ignorance is bliss? Before when other kids snubbed him or teachers treated him unfairly he probably called it bad luck. Now he wonders if it's the autism ... and it probably is.

You need to think less about how to get him to think differently and more about how to get the people around him to treat him differently.

Have you asked your son why he is having meltdowns? I expect it was a stressful appointment and the uncertainty of the outcome is difficult for all of you. My son was diagnosed 16 years ago. There was a six month wait between the first appointment with the pediatrician and the diagnosis assessment. I remember how stressful that waiting time was. 

Do you have a local National Autistic Society support group? When my son was diagnosed we were given a leaflet with contact details and I called the coordinator. She came to visit me within a week. I don't think you need a diagnosis to ask for help from a support group. We had members in our support group who's children weren't autistic but their conditions were similar or rare so there wasn't any other group for them. You can search for groups on here. For me, other parents were the biggest help because they understood in ways that people that haven't experienced it can't. 

Nobody will "teach" you about autism but sometimes connecting with other parents can help you navigate the diagnostic process and be a source of emotional support. I can recommend books and other resources. You can message me if you want more information. I know it feels scary to not know how to help your child. It will be alright. If you can get get to the bottom of why your son is having meltdowns and manage his stressors then it will be easier to cope in the coming months. 

I also expect your son is aware of the transition to secondary school coming up, and also puberty. I found that those major milestones caused my son anxiety - the transition, but also the greater expectations from teachers and feeling different to peers that appear to be more excited than anxious about it all. It can all lead to feelings of overwhelm and "difference". That can be really hard to verbalise as an autistic person. I'm autistic too. I was terrified of growing up when I was 10. I knew about puberty and periods etc., but when it happened to me I didn't connect what I had learned with what was happening to my body. I was just scared and rejected anything to do with growing up, like wearing a bra or having sanitary products in my school bag. Of course me being autistic wasn't even considered then. Just giving you one perspective of being that age for consideration. Of course other factors may be causing your son anxiety. 

So sorry for the late reply! I thought I would get an email if someone responded.

The school suggested we refer him, which we did back in July 2022. So it was a self-referral by parents to CAHMS. We’ve seen more and more behaviours emerging over time.

During the CAHMS assessment the counsellor said that we were definitely “looking at a neurodivergent brain here” and her report has described him as a ten year old boy with autistic traits and an anxious presentation. He already had a years CBT through Barnardo’s, so CAHMS say they can’t do anything, which is why there is no further help.

We have to wait on the assessment. Although I imagine even if/when he gets diagnosed it’s not going to change anything. We just have to try to learn how to parent an autistic child and it seems the internet is the only way to do that! 

Thanks so much for your response.

But just to be clear CAHMS has referred him for an assessment?