Autism used to be something that most people knew nothing about. Now there is growing awareness of the effect on someone of being on the Autistic spectrum - a lifelong developmental disability that means someone has difficulties with communication and social interaction and how they experience the world. But public services and support for people with Autism and their families still have a long way to go.
I’ve been contacted by an increasing number of constituents who have a family member with autism and who need help on a whole range of fronts. The biggest concern I’ve been asked for help with is housing. You might be perfectly settled in your home but as an autistic child grows you become concerned about their safety if you live high up or by a busy road. So moving becomes a necessity. You might have good relations with your neighbours but end up with complaints if your autistic child is noisy at night, banging on the walls. And you might end up with complaints of the noise your child makes in the garden in the summer. Again, you’ll need a move. All children need their own space as they get older. But it becomes particularly acute for a teenager sharing a bedroom with their autistic sibling. They might be woken many times at night and be too tired for school. A larger home then becomes essential.
All children need stability and security and constant moving is never a good idea. But if a family with an autistic member is given notice to quit their private rented home they can end up in a hostel or temporary accommodation. Disruption and change is particularly hard for an autistic child and it is difficult for them to cope in shared accommodation such as a hostel and if they also have to change schools, or make a long journey to their existing school.
Parents complain to me about delays in getting their autistic child assessed which can delay them getting the diagnosis and the support that they need. This is especially important to ensure that they are in the right school with the right support. Parents complain that if it’s to be a special school, they are not fully included in the decision about where their child will be placed.
And meeting the care needs of one or more family members who are autistic can affect the ability of the parent to work and therefore involve claiming benefits. That’s a challenge for any family but for someone who doesn’t speak English or who’s new into the country, finding their way through the benefits system and finding the right help by way of services can be a problem.
The council has a strategy on services and support for families with autism which they agreed with the local health service. But all the services are overstretched. The council needs to be providing more help to those with autism and yet their budgets are being cut.
As chair of Parliament’s Joint Committee on Human Rights I’m leading an inquiry into the Assessment and Treatment Units where some autistic young people are detained. We are particularly concerned that the concerns of parents about whether the place their child is being held is right for them are not listened to and that parents’ concerns are treated as a nuisance rather than an important warning that things are not right. The Human Rights Committee will be publishing our report later this year.
I’m proposing that the Government ensure that every council has a detailed strategy for supporting people with autism and that they ensure that both the council and health services are fully funded to meet those needs. It’s important that autism is more recognised and understood. But it also essential that with that comes the support to which those families should be entitled.