Autism Awareness Week

This week is Autism Awareness Week – and yesterday, April 2nd, was World Autism Awareness Day (WAAD).

The purpose of WAAD is to highlight the challenges faced by those with Autistic Spectrum Disorder (ASD) and their families, and how it impacts on their daily lives.

What is Autism?

Autism is a lifelong, developmental disability that affects how a person communicates with and relates to other people, and how they experience the world around them.

Autistic people see, hear and feel the world differently to other people. If you are autistic, you are autistic for life; autism is not an illness or disease and cannot be ‘cured‘. Often people feel being autistic is a fundamental aspect of their identity.

Autism is a spectrum condition. All autistic people share certain difficulties, but being autistic will affect them in different ways. Some autistic people also have learning disabilitiesmental health issues or other conditions, meaning people need different levels of support. All people on the autism spectrum learn and develop. With the right sort of support, all can be helped to live a more fulfilling life of their own choosing.

(source – National Autistic Society website)

So what is it like to live with ASD?

Many of you will know that my son Jack has ASD. He was diagnosed when he was 3 years old, and we have lived with and learned about ASD over the past 10 years. But what is it like to find out your son or daughter has this condition, and what does it mean for them and for you as parents …

There is a saying ‘once you have met one child with autism, you have met just one child with autism’. Anyone who knows anything about autism will know just how true this is – no two children (or adults – ASD is often not diagnosed until adulthood) with ASD are the same. Yes, they share traits, but how they affect that person and the ‘severity’ of their autism will vary. Autism is a spectrum, and it also encompasses a number of other conditions. Some people with ASD may be non-verbal – they are unable to communicate verbally. Others may appear ‘normal’ and their ASD may go undiagnosed.

The stereotypical view of autism is either a child sitting in the corner of a room rocking back and forth to comfort themselves, or someone with an exceptional skill – a ‘savant’. But most people with ASD will not fit either of these stereotypes.

Before describing some ‘autistic traits’, I will stress that just because someone shows some of these traits, it does not mean they have ASD. As anyone who has been through the process of getting a diagnosis will testify, it is a very long and often frustrating process. There is no single test where you get definitive results – it is an assessment covering many different disciplines over many months or even years, with input from many different professions.

We first noticed that there was something ‘not quite right’ with Jack before his second birthday. Jack had missed some of his development targets – he didn’t respond to his name, he didn’t point at things. We first raised this with our GP (we were living in West Yorkshire at the time), and whilst she could see that he was a ‘bit behind’ she was not overly concerned.

We moved to Leighton Buzzard a few weeks before Jack’s second birthday. It was the Health Visitor at one of Jack’s regular checks that first suggested that Jack should see the a specialist team. There was a suspicion that Jack might have a problem with his hearing.

It was in October 2008 that we attended a clinic in Dunstable with a number of other children, where they assessed them as a group and individually. Out of the group, a third were given the ‘all clear’, a third were identified as being ‘probably nothing but we will keep an eye’, and the remaining third were referred for further assessment. Jack was in that last group.

Our hearts sank. We immediately started jumping to conclusions, but no-one would give any indication as to what they thought the problem might be. My husband Adam telephoned the clinic almost as soon as we got home to try and find out more information, but they wouldn’t commit to anything.

What followed was a never ending round of assessments – hearing tests, Occupational Therapy, Multi-Disciplinary Assessments, Doctors and Paediatricians.

At the same time as all of this was going on, Jack started nursery at Mary Bassett School. We made them aware of some of Jack’s quirky behaviour, but they were unphased and were confident they would be able to support Jack. Several blocked toilets, overflowing sinks and other incidents later they realised that Jack needed some one-to-one support, and Jack met the wonderful Emma. We have never forgotten all she did for Jack – she was loving, patient, understanding – I still remember the day Jack left Mary Bassett for ‘big school’ – a lot of tears were shed!

Jack also got support from the Early Learning Support team at Central Bedfordshire Council (this was a long time before I was elected!). This is where we met another fantastic person – Julie. She would come to the house once a week to spend some time with Jack, and to provide me with support and advice. I still smile when I think of those visits – when Jack had had enough, he would stand up and say to Julie ‘Bye bye now’ – that was her signal to go.

We also received support from the local Mencap group through the ‘Opportunity Playgroup’ – it was a real support for me in those early days when I really didn’t understand what Jack’s problem was. It was really helpful to speak to other mums and the Mencap team, and learn from their experiences.

Over the course of the next 12 months, we attended many appointments at the Edwin Lobo Centre in Dunstable. As time went on it became more and more apparent that Jack had autism. It was around October 2009 that Jack received a diagnosis of autism.

For us, it was important to get a diagnosis. There is no treatment for autism. There is very little ongoing support (from the NHS) for those with autism (that is not a criticism, it is simply that there is very little for them to do. Jack continues to attend annual reviews at the Edwin Lobo centre, but that is more because of some of the associated problems he has and not directly because of his ASD). But it helped us to understand what the problem was, what the prognosis was, and most importantly, it was key to accessing specialist education for children with autism.

Once diagnosed, the next big challenge for a parent with a child with any special needs is to get a ‘statement’ – a Statement of Special Education Needs. Whilst schools can identify children who are in need of some additional support (School Action and School Action Plus), the process of getting a statement is a statutory process that is conducted by the local authority.

I will cover this in another post over the next few days …

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