By Lisa Mulholland
I am an autism mum and I get ‘political’ sometimes.
It is difficult not to be when current waiting times for an autism assessment in North West Kent is between 2 and 3 years due to NHS cuts and over the years has varied between 1-2 years. This is frustrating and can really affect an autistic child’s life as diagnosis means children get support they desperately need in school. Well for now anyway as schools all over the country are having their budgets slashed, meaning many Teaching Assistants will no longer have jobs. Terrible for the teachers but a disaster for the children who so heavily rely on support staff.
The school budget for my child’s school alone is also set to be slashed by £72,000 by the year 2019. And I dread to think about how many children will feel the fallout of this.
For me once I finally got a diagnosis for my eldest I was unaware that the battle had only just begun and it took 4 years from seeking an autism diagnosis to finding the right primary school setting.
Anxiety, school refusal and mental health issues became a barrier to my son’s education and eventually his overall quality of life. It started aged 6 with self- harm and progressed into suicidal tendencies by the time he reached the age of 10.
Although shocking, my son is not a one-off case. While autism itself IS NOT a mental health condition, 71% of children who have autism develop mental health conditions, according to the NAS. *
Compare this to non-autistic children where the figure for developing a mental health condition is around 10% and you have a staggering 61% difference that cannot be ignored. **
When I had reached the end of my tether with new battles arising after two failed secondary school placements in the space of 3 months, due to my son’s panic attacks, self- harm and absolute emotional breakdown I put pen to paper.
Children and Adolescent Mental Health Services (CAMHS) had rejected us from their service a total of 6 times, so we had an escalating mental health issue that no one would treat.
I literally had nowhere to turn so when I was given a glimmer of hope of prospective specialist school that could cater to my son’s high academic ability, I was overjoyed. There are not many schools like it and he was deemed too ‘bright’ for other specialist schools.
But he was initially rejected by the school, so another simultaneous battle ensued. Eventually they agreed to let me son have a trial day.
The night before the trial he burst into tears and said, ” Why do I have to be autistic, I just want a normal life, I just want to go to school and hang out with my mates” before having a panic attack and physically harming himself many times throughout the night.
That night I wanted to complain to someone. But I didn’t know where to start. So, I started with David Cameron who was the Prime Minister at the time.
I was desperate, heartbroken and angry all at once but when I finished writing, I felt a sense of relief that I had got it off my chest. I wasn’t sure what I wanted to do with it, but a friend of mine read it and was moved by it. She had a political group on Facebook and we decided to share it.
I wasn’t prepared for what happened next.
My letter kept being shared and people started commenting about how they could relate to it and I was being spurred on to continue my battle by people I had never met.
Then I was contacted by a BBC journalist who was interested in my story.
I was apprehensive at first, but after much deliberation and assurance from The BBC we agreed to do it. We felt we had nothing to lose and wanted to speak out about mental health and felt if we could help just one other family the. It was worth it.
The BBC staff came to our home so that we were comfortable and were very sensitive and respectful. The staff were so moved by our story that they offered my son a treat to visit the studios and watch the editing process. The staff spoke to him about anxiety in the workplace and gave us some hope when we felt there was none.
We appeared on BBC Inside Out and the Health Correspondent took my letter straight to the Director of CAMHS Kent and Sussex Partnership.
To see my letter being addressed by the Director on the BBC was surreal but it encouraged other friends’ children in the similar situations to speak out about their mental health issues. Just that alone for me feel like I had made a positive difference.
Just when I was about to lose all hope, a letter and a political group help give me a second wind to fight some more. It helped us push the services some more, fight for mental health treatment and fight for a school placement.
We were then invited onto radio and Victoria Derbyshire to speak about our issues and 18 months later are still in contact with the staff at BBC South East.
They were personally touched by our plight and are now delighted to hear of the progress my son has made.
He is no longer plagued by his anxiety (albeit still present) he now has a quality of life that everyone is entitled to. The school listened to my case and gave him a chance. He is now the happiest he has ever been in his life because he is in a school setting that caters to his academic and social and emotional needs and finally got the CAMHS treatment he desperately needed.
He is excelling in subjects that I never thought he would attempt and he no longer has panic attacks. We are able to manage his anxiety and mental health issues.
None of this would have happened if I hadn’t been so compelled to ‘get political’.
I want to continue to make other parents in similar situations aware that the difficulties and frustrations many parents feel with a lack of services to support their children whether it be NHS waiting lists, CAMHS waiting lists or lack of school support is a political issue. People need to be held to account and we should never feel silenced.
The buck stops with the government and sometimes direct action needs to be taken to let the voices of our children be heard. And above all we should never take no for an answer.
National Autistic Society “You Need to Know Campaign”
Mental Health Foundation
To read the actual Letter that was sent to the PM please click here: