He attends a mainstream school with a specialist Asperger’s support unit. This has been the key to his success. So whilst we are currently feeling very pleased with what Peter is achieving at school, things look a little less certain when we contemplate the next stages in his life – A-levels, university and developing some independence.

Preliminary enquiries reveal that support in higher education for those with AS and special educational needs can be very good. He could have a note taker and a mentor and a number of practical accommodations may be made. However, Peter may well have to manage in a sixth form with no AS specific support and I have heard of young people whose A-level placements have failed without this specialist support. As ever, none of this looks straightforward.

As he looks towards higher education, Peter currently has very little real independence. We take him everywhere he needs to go due to his mobility issues, prepare him for his activities, cross him over roads etc. He has through necessity or circumstance, had very little experience of getting himself to and from places safely, handling his own money, negotiating social obstacles and managing conflict.

By the time young people reach sixth form, they have the opportunity to consolidate these independence skills but Peter will probably still be at the learning stage. Independence, if it is achieved at all, will be hard won and gained on a much longer timescale. I am happy to confess to having sleepless nights about it. Aside from supporting him in his GCSEs, the task in hand at this stage is to help him to develop some level of independence by the time he moves on to sixth form. We have begun this process but it is a very slow one.

The greater freedoms and of course, responsibilities of life at university will be very difficult for him and us, particularly if he finds himself far from home. So far in his school career, we can still count the number of friends he has made on the fingers of both hands. If the chance of friendship comes with parties where alcohol, drugs and yes, lets mention it, sex, are available, will Peter try and join in to make friends? How will his judgement work in these situations?

Peter’s lack of experience makes him extremely vulnerable. I know all parents worry about these things, to some extent. For parents of children with AS, things are different. This is because it can be extremely difficult to teach independence skills to children with AS. Also, there is no way of telling which areas of development will progress and which areas won’t, and it can be a very long time before you know if you have been successful or not. Some children will never be able to live independently.

On a positive note, I do hear about young people with AS who make a success of their sixth form and university years. The thing that strikes me the most is that parents are often very surprised by how much their offspring have grown up – although there can be amusing stories concerning shopping and laundry! Indications are that Peter will mature, although the future is still very much an unknown quantity and that is scary.  Of course it is not scary to Peter – he can’t wait!  And that gives us all hope.

Ellen Power is an author and writes the ‘Guerrilla Mum' blog.

When I look back to when my children were small, I am struck by how utterly complex they were, and how indescribably difficult it was to carve out a path for them through the education system.

On the one hand we had Peter, who appeared to be terribly intelligent, but had very limited social skills and was socially excluded by his classmates and their parents. He was bullied to within an inch of his sanity in primary school and when he joined the Asperger’s unit at secondary school, it was a crisis placement. There was simply no other school in our county that could have met his needs. Without this school, he would have had to have gone to a residential school that specialised in Asperger’s syndrome and we would have all found this extremely difficult.

Then we had William, who was diagnosed with severe verbal dyspraxia and motor dyspraxia when he was four years old. He also suffered from bullying. All of these things impacted greatly on his childhood development and on his progress at nursery and school. William got his statement when he was four, and Peter when he was nine years old.

A statement of SEN is the document issued by the local authority after it has carried out a statutory assessment of a child’s special educational needs. It details the child’s SEN and sets out the provision necessary to meet them. For more information on statements, read this useful BBC article.

It was not easy to get statements for our children. We were fortunate enough to have a very good health visitor but once the children started school, we were pretty much on our own, in terms of finding out about help they could access. Many hours were spent on the phone as I tried to track down things that could help. I chased placements in specialist speech and language and Asperger’s support units like a mad woman!  I stalked teachers after school for ‘a quick five minutes’ to talk about education concerns or, much more frequently, bullying incidents. 

We wrote what seemed like mountains of letters and stacked reports in boxes as they came through the letter box. We challenged education officials and threatened them with legal action and with the press. We appealed to the Tribunals Service, Special Educational Needs and Disability on behalf of our children on more than one occasion. These parent support organisations were extremely helpful to us during this time: the Independent Panel for Special Educational Advice (IPSEA), the Dyspraxia Foundation, the National Autistic Society, Contact a Family and the Advisory Centre for Education (ACE). At last in 2006, I was able to say that both of my children had the statements they needed.

Was it worth it? Did we get it right? William is now integrated into his school with support from teaching assistants to help him with organisation, getting his work down in class and to help him manage other learning needs. He is doing well in school, is musical, and has friends. Peter is now doing eight GCSEs and one AS level. After years of academic failure and not being able to get his work done without a scribe (someone to write for him), he has succeeded at secondary school and can now type enough words to do his own essays. He has to date completed six essays on his own, with no intervention or help from anyone else and is getting A grades for them, even though his own handwriting is still very rudimentary.

He is also musical, artistic (despite severe fine motor difficulties) and is planning to go to university. He has friends, which for children with Asperger’s is a significant achievement. None of this would have been possible without the right therapies and help in school. My message to parents is this: if you are concerned that your child may have SEN and you believe they need more help in school, don’t wait to see how things will turn out. Start to look at your options now and keep on pushing for the support your child needs.

Ellen Power is an author and writes the ‘Guerrilla Mum' blog.

Listen to a podcast of BBC Radio 4 Woman's Hour which features Ellen Power.