Max

This story was written by Max's mum Janet:

MaxMax was born on the 1st of June 1993 weighing just over seven pounds. Although he was slow to feed, he reached all of his early milestones; he smiled, rolled over and crawled on time, walked two weeks before his first birthday – although on tiptoe – and was walking well by 14 months… still on tiptoe. By 15 months he could say about eight words and was generally a very happy and contented baby.

A change in behaviour

By 20 months Max’s behaviour had changed noticeably. He would stare into space and seemed only to be stimulated by television; and if he wasn’t watching television he would be running around the room with a toy grasped firmly in each hand. He was a very different toddler. The health visitor was shocked at how much Max had changed and agreed that we would need to investigate further.

Max underwent developmental tests at the age of two. He scored below chronological age on social skills, hearing, speech and hand-eye co-ordination but 12 months above average for his cognitive abilities. A speech therapist had told me to encourage eye contact but it didn’t work and I felt a failure. I realised that I just wasn’t prepared for this; I hadn’t studied psychology or child development – I was Max’s mum and I needed help, but it felt like none was forthcoming.

Max gets diagnosed with autism

I was six months pregnant with our second child when Max was finally diagnosed as having ‘atypical autism’. He was now three years old; we had a diagnosis and knew he had strong cognitive skills. He was offered an early nursery place which was then cancelled because he was still in nappies. It was one step forward, two steps back.

Most people have some idea of what being a parent involves, but no-one can be prepared for the world of the special needs parent. I was only just entering the ‘battlefield’ and this was my first lesson in understanding that your local education and health authorities will try to get away with giving as little as possible and everything you need for your child requires a fight.

We then tried Applied Behaviour Analysis (ABA) which had been recommended by a local family. It was the first proactive thing we could do for Max. He started the home programme aged three and a half with only 50 words (colours, numbers and nouns). He never put two words together, except in learnt phrases such as ‘coming to a cinema near you’, and never said hello or goodbye, yes or no, please or thank you. The change after only three months of ABA was amazing – he could answer yes or no, make choices and ask for things using three to four word sentences. Many of his phrases were learnt but he was applying them appropriately. We felt like we were getting somewhere.

Where is Max now?

Fast forward 15 years and Max is now in sixth form studying an A-Level in Fine Art and a national certificate in Media. He has been in mainstream education since he started school and coped pretty well. We have been fortunate – he has had full-time support and the Headteacher at his secondary school has a background in ASD education, which really helped.

In June 2012, Max will finish sixth form and we hope he will go to college to study a BTEC Level 3 in Art and Design. Max knows what is expected of him at school and he puts in a good day’s work but college will be a big step for him; it’s a much bigger place with many more students and my fear is that, without support, he will get forgotten. He doesn’t mix with his peers and his only friends are his online friends who share his interests.

Concerns about college

Max has always had problems with motivation, which is why one-to-one support is essential. Left to his own devices, he wanders around in his own world – he has always needed someone to keep him on track, particularly at the start of lessons. The college canteen will be too loud and chaotic for him and I very much doubt he’d go there - he’ll need a place where he can get away from everything when he needs to. From the age of three, his Statement of Special Educational Needs has ensured he’s had the support he needs but that won’t be the case at college. For Max to cope, the college will have to recognise his needs and accommodate them. I don’t think this is asking for too much.

But the main concern relating to college is actually getting him into one. The hope is for Bexley College but they have yet to confirm they can support him on a Level 3 course. He would be guaranteed support on a Level 2 course but he is capable of more than that. I don’t want to have even a glimmer of hope because, if they can’t meet his needs, there are no other options.

Giving Max the opportunity to develop his skills

If Max isn’t able to go to college then he will be at home with us. Max would be happy with that, he loves being at home on the computer and going to the movies (with me). But surely he has the right to continue his education in order to develop the skills he needs to gain some form of employment. In all honestly, I can’t imagine he could ever have a full-time job – he couldn’t travel independently - but he has talents and with the right support he could hold down part-time or freelance work.

Back in 1996 we felt lost and unsupported and fifteen years later, we feel like we’re back at square one. There have been improvements and some colleges are geared up to support some ASD students but how can it be that education authorities – who have seen an explosion in ASD support needs over the past 15 years – aren’t ready for this next step? The answer: because he’s an adult and no longer their concern.

Want to share your story?

If you want to share your story, please email Anabel Unity Sale, Press and PR Officer: ausale@ambitiousaboutautism.org.uk