My Life With Autism

Continuing on with our series of videos and blog posts from supporters, here is testimony from Tracey in the North East. She and her sons have fought hard and here is a snippet of how difficult schooling has been. We are very grateful to Tracey for taking the time to write this piece and for being so open:

"I have two sons with autism.

Eldest son, Age 13.

Diagnosis: It took approx 2.5 yrs to get my eldest son diagnosed when he was age 6-7. We were passed from speech therapist to consultant to another consultant then another until a lovely consultant diagnosed our son with ASD & ADHD after a few home visits. It was extremely stressful we had to do own research to find people to help & support us especially after diagnosis. We felt really isolated. This went on for a few years and difficulties arise all the time.

There were major problems with school: primary school Head Teacher told us that our son would never be happy and we just had to live with that.

We moved him into a new school which was better but his behaviour was so difficult & impulsive. He had very little friends at home or school, never getting asked to birthday parties, sleepovers etc.. This impacted on our son’s self esteem and resulted in a few incidents of self-harm.

Transition to secondary school was the nightmare I was expecting and only lasted 6 weeks in mainstream with year managers telling us and our son that he had to meet them half way otherwise he would be bullied, would revert to self-harming and end up in detention all of the time, resulting in a very sad boy - horrendous!

Even when moved to main-steam secondary with Autism Unit it was still horrendous as nobody could cope with his behaviour ending in numerous suspensions.

We again felt really isolated and asked for help from Parent Partnership officer and Autism in Mind. We can't attend any groups because we both work. In the end, a few months ago, we felt really pressurised into putting him on medication (Ritalin) otherwise we were being told that we had to find an alternative school.

We have asked for years for therapy, psychology etc. but have got nothing. Eventually, last year, child & family stepped back in & now see our son once a week for a chat. His behaviour has improved and he has had a better year, long may it continue.

Although he has become more anxious now than he ever was. My son is still socially isolated, no friends at home or even at judo club. Neighbours are just awful, calling my son an alien, freak and brain-dead, parents and children alike.

My son excels at sporting activities such as judo, swimming, ice-skating, football etc..

My youngest son, age 8:

Was certainly more positive in terms of diagnosis. Fast-tracked through Autism Outreach team as he had a sibling with a diagnosis. We got play therapy through the PACT programme for a year & already had inside knowledge of help that was available & who to contact.

We have different problems with soiling but nobody seems to be able to offer solutions so that is ongoing. He is also very much isolated, no friends at home but good support at school, mainstream with classroom support.

For both boys it took over 2 years to gets statement for school and I had to apply on my own without the support of school.

There are many other problems with taking boys out, always in trouble at soft play areas and always on edge as know we would have parents and managers tapping on your shoulder to complain about son's behaviour.

Life is hard and we need support as do many other parents who are living similar lives to ours. That is why we need groups like ACT NOW to fight our corner and to speak for the thousands of us who so desperately need a voice."