How mother and daughter are supporting others after being diagnosed with autism on the same day
PUBLISHED: 06:30 19 May 2018
After former BBC health correspondent Clare Smith and her teenage daughter Ally were diagnosed with autism on the same day, they vowed to battle to raise awareness and improve the lives of others living with the condition. KAREN BETHELL spoke to them about their efforts...
Clare Smith, 61, and her daughter Ally, 18, both struggled for years with depression, low self-esteem and feelings of worthlessness.
But, when relentless bullying at school led to Ally attempting to take her own life at the age of 13, things reached crisis point.
Diagnosed with anxiety and depression aged nine, Ally had always felt “different” from her peers.
“I had always spoken differently, I never felt I fitted in or had a real friend and, although, intellectually I was years ahead, I was far behind emotionally,” she explained.
When mental health workers recommended the teenager be referred for assessment for autism, her mother also began questioning her own “differences”.
After losing her job at the BBC in 2006, Mrs Smith felt her life spiralling downwards.
“I had three other jobs after that, but I always felt like a fake and just couldn’t fit in,” she said. “I had gone off the rails, my life had crashed, I had depression and huge anxiety and I just couldn’t understand why I could never make friends.”
Sent to a psychiatrist by her GP, Mrs Smith was told she had borderline personality disorder – a serious condition with symptoms that can include paranoia, difficulty forging relationships, extreme anger and suicidal feelings.
“It was like a body blow, I tried to accept the diagnosis, but I had sustained a happy marriage and it just felt wrong,” she said.
After six months and a number of return trips to her GP, Mrs Smith, who has been married to husband Ralph for 26 years, was sent to a second specialist, who told her she had Asperger syndrome – a type of autism.
“It was such a relief and so wonderful that someone understood and could explain all the things that had felt wrong all my life,” she said.
Both mother and daughter received letters confirming their diagnoses on the same day in May 2013 and, after an initial struggle with feelings of anger and resentment, they say their shared experience brought them closer together.
Ally said: “After the relief, I felt this sinking feeling of thinking I was going to be different and disabled all my life, and although I have accepted it and I am proud to say I am autistic, it is hard as it is not like a physical disability which other people find easy to comprehend.”
Keen to help others experiencing similar problems, the pair, who live at Sheringham, set up the Norfolk Asperger Autism Facebook Group, which now has more than 50 members.
They are also helping shape the future of services for people with autism as members of Norfolk County Council’s (NCC) new Norfolk All Age Autism Partnership Board (NAPB), set up in response to the government’s National Autism Strategy, which requires local councils to develop services to meet the needs of people with autism.
Made up of representatives from the county’s five Clinical Commissioning Groups, as well as police, Healthwatch volunteers and people with autism and their families, the board will work on producing an autism strategy for the county, which will include improved diagnostic services for people with Asperger syndrome and basic autism training for all local NHS and council staff.
“What this is doing is giving us a unified voice,” Mrs Smith said. “We know there is not much money to go around, but we feel that autistic people haven’t been getting a fair share.
“There is a long history of disillusionment in the autism community, but I feel very positive about what is happening because both the county council and the CCGs have put money into this, which suggests they want to make it work.”
Ally, who was last year forced to drop out of university because of anxiety and depression, is now working for a company carrying out research on gender equality in the workplace, and volunteering at North Norfolk MP Norman Lamb’s office.
“I am the happiest I have ever been and I think that is because, for the first time in my life, I’m not having to mould myself or rein myself in; I feel respected and accepted by the people around me,” she said.
Mrs Smith, who is working with the NAPB to set up a network of support groups for people with autism and their families, said she too feels positive about the future.
“Raising awareness and understanding of autism is absolutely fundamental as, if people can accept our ‘odd’ or unusual behaviour is part of who we are, then a lot of the problems we have will disappear,” she said.
Asperger syndrome: a ‘hidden’ disability
Often referred to as a ‘hidden’ disability, Asperger syndrome is a lifelong, autism spectrum condition that affects the way people process information.
People with Asperger syndrome are usually of average, or above average intelligence.
They may have difficulties interacting socially, find making friends difficult and struggle to understand jokes, sarcasm, ‘small talk’ and social cues.
They can seem aloof or withdrawn, talk excessively about their own particular interests, interrupt others, make ‘inappropriate’ remarks and give the impression of being uninterested in others.
People with Asperger syndrome also have problems with ‘social imagination’ which means they can find it difficult to predict outcomes of situations, understand how other people might feel or react to a situation and interpret facial expressions or body language.
Autism facts and figures
There are around 700,000 people on the autism spectrum in the UK and research carried out by the National Autistic society found that:
Thirty four per cent of children on the autism spectrum say the worst thing about school is being picked on.
Seventeen per cent of children on the autism spectrum have been suspended from school, with 48pc of these suspended three or more times.
Seventy per cent of autistic adults say they are not getting the help they need from social services, with at least one in three autistic adults experiencing severe mental health difficulties due to a lack of support.
Just 16pc of autistic adults are in full-time employment, with only 32pc in any kind of paid work.
For more information, visit www.autism.org.uk or the National Autistic Society Facebook page.