Growing up is hard to do... (especially with Asperger's Syndrome)
The children are now back at school following the Easter break. Peter has some Year 10 GCSE exams scheduled for mid May. For us, there is a great sense of having ‘arrived’. Peter has Asperger’s syndrome (AS), some mobility issues and has a statement of special educational needs.
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.