A conversation about autism

Jenny, incredible mother of 16 year old Max talks to us about learning and autism.

When did you realise that your child had a learning need?

It was picked up during child development assessment on a hearing test actually. The assessor was very good. Max wasn’t responding to his name. The assessor asked if he was talking, and we said yes…at that point it all fell into place.

I thought of course. Some of the social interaction at that age was not quite there. He suggested we have Max assessed for a learning need.

I was lucky, I had a friend whose son is 2 years older and was diagnosed with Asperger’s. With her advice we got everything in place for Max in 6 weeks rather than 6 months or more that it takes. He was in a specialist nursery by age 2 and half. We paid privately for an educational psychologist so got the diagnosis very quickly. 

Did you get support from your school in identifying your child’s needs?

He had a diagnosis already so no, but they did get him into a social communication group. In early years they did this fantastic thing for Max. If you gave him a blank piece of paper to write on, he’d freak out, but the school put a green spot in the middle of the paper at the top and yellow spot near the bottom on the paper and told him to fill the space between the dots with writing.  This sort of thing, giving him a defined and specific task allows him to do the work. 

There were provisions in school for him, but we couldn’t get an EHCP for him. There are limited resources for SEND. If your child is achieving the targets, then you won’t get an EHCP. Learning needs evolve during the early years so you are always moving the targets. You might think you’ve got it sorted for a while and then it all changes again. I wish that we had gotten one as it would have really helped with secondary school as his current school just doesn’t have the infrastructure. 

The council has a limited budget, they are going to try to do everything to not give out EHCPs. I’m so furious. Max is sitting GCSEs this year. He could do with so much more help. 

The system is geared up to not help or protect the kids. 

The school is good though. He comes in a day early at the beginning of the year and picks out where he wants to sit in the class. Usually, he will be on the side of the class, near the front or door rather than window. He needs to minimise distractions.

And I use parent consultation meetings as a key point, but also put in review meetings with teachers at the start of every year. This helps a lot. 

Has having a diagnosis helped your child’s learning?

Absolutely. The report gives you access to the National Autistic Society https://www.autism.org.uk  and all the fantastic stuff on the website. Their Early Birds course is life changing, its free but you can only do it if you’ve got a confirmed diagnosis. 

Can you share some of the challenges you and your child have experienced?

It’s ongoing and you think you are ok, but you need to routinely re-evaluate learning needs. 

You think it’s all going well and then you realise that things have changed again. You are always reactionary rather than pro-active. 

Like this weekend, Max was given several pieces of homework, some of which he really struggles with. He was agitated with so much work. He will spend literally hours on it, you have to tell him before he starts that he will do a set amount and then take a break. You can’t tell him to just take a break in the middle. He needs structure. He needs scaffolding or a framework and then he can fill in all the bits. Open ended assignments are a nightmare. 

What would you say are some of the positives you and your child have experienced?

Because he loves structure, he will absolutely do what you say you want him to do. So, set him up with a task and he is on it. 

When he is motivated his level of engagement is really good, he can become an expert. Although equally he can become a bit obsessed, so that can be a bad thing. 

His honesty is fantastic. 

On a good day it is fascinating to see how his brain works, he comes up with things from a weird angle, it’s really interesting. 

He is also incredibly low maintenance in that he can sort himself out. If you aren’t careful though he could spend the entire day in his room.

What are some of the things that you have learnt that you’d like to share with parents going through the same experience as you?

Visual timetables.  Put everything into manageable portions of time. I used drawings for younger kids but even when they are older if having a hard time. 

A teacher on the Early Bird’s course always uses the example of me on the beach with Max. I had been trying to get him off the beach to go home. I said let’s go and we can get an ice-cream, it just wasn’t working. So, I drew 3 wavy lines and an ice-cream in the sand. I pointed to the drawings and said first beach and then ice-cream. It just clicked, even though I’d been saying the same thing over and over again. The picture just helped. 

Don’t do 2-part sentences. The most is first and then. 

Don’t give surprises

Consider learning in different environments. Kinaesthetic play is good. He can learn better under the table than at the table as there are less distractions.

Sensory feedback helps him to destress and think better so he uses a yoga ball to sit on at the table and when he was younger, we put a resistance band on the chair legs which he could use in the same way for sensory feedback.

Thank you to Jenny for sharing her story with Level Up Kids. Both her and Max’s names have been changed to protect their privacy. Max is now 16 years and soon to be sitting his GCSEs. The workload has become a bit too much for him and his parent’s have just gotten a referral to CAMS (Child and Adolescent Mental Health Service) through their GP. Jenny is going to re-appeal for an EHCP. They have also booked a holiday over the half-term, for a well deserved break.

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