Living with OCD and Autism

During Autism Awareness week, Steve Slavin tells us about his lifelong struggle with OCD, other mental health problems and autism. A late diagnosis of autism when he was 48 years old, prompted Steve to change his life and rebrand himself as an openly autistic person. He has created online resources for adults with autism and is soon to publish his first book.

NHS Direct defines Autism spectrum disorder (ASD) as a condition that affects social interaction, communication, interests and behaviour. It includes Asperger syndrome and childhood autism. Some people also use the term autism spectrum condition or ‘neurodiverse’.

Approximately 1.1% of the population in the UK may be on the autism spectrum. This means that over 695,000 people in the UK may be autistic. Mental illness, including OCD, anxiety disorders and depression, can be more common for people on the autistic spectrum than in the general population.

Steve Slavin received a clinical diagnosis for OCD long before he was diagnosed with autism. He grew up in the 1960s and recalls having obsessions and compulsions involving counting and repetitive actions when he was about 7 years old. ‘I had to perform these repetitive actions an even number of times before I could move on to the next task.’

Steve spent his entire childhood as an inpatient and outpatient at Great Ormond Street Hospital in London. Little was known about autism spectrum disorder (ASD) at this time and Steve was labelled with infantile schizophrenia and prescribed medications such as Lithium and Valium. All treatment was unsuccessful. He also recalls attending speech therapy on a regular basis as he was practically non-verbal until he was 6 years old.

Doctors told Steve’s parents ‘He’ll have to be put into an institution and he’ll probably never come out.’

When he was 11 years old, doctors told Steve’s parents ’He’ll have to be put into an institution, and he’ll probably never come out.’ They said that Steve was abnormal and emotionally disturbed. Instead of being sent to an institution, Steve was sent to a ‘special’ education boarding school that was suitable for ‘maladjusted’ and ‘disturbed’ children.

He went on to have a lengthy career in the music business, and also worked for many years as a freelance corporate filmmaker. Despite a successful work and family life, Steve has experienced some dark times and has continued to suffer from severe anxiety, OCD and depression. ‘Some days I really do struggle to get out of bed and face the world. Without medication for anxiety and OCD, it is quite possible that I may not be in a fit state to leave the house,’ he says.

For most of his life Steve struggled to understand his own symptoms and assumed that they were due to poor mental health. There was always something else that he couldn’t quite put his finger on until he attended a course of Cognitive Behavioural Therapy (CBT) for his OCD in 2008. He was told by the psychologist that he might be on the autistic spectrum. Steve rushed home to research autism on the internet and soon realised that autism was the thing that he could never quite put his finger on. Suddenly everything made sense to him and he soon received a diagnosis for high functioning autism.

‘I naively thought that a team of highly trained specialists would fix me, but I quickly learned that autism is not a fixable condition’

Following his diagnosis, Steve was optimistic about his future. ‘I naively thought that a team of highly trained specialists would fix me, but I quickly learned that autism is not a fixable condition,’ he says. He also assumed that various support services would be available to him, but there were no services available for adults on the autistic spectrum.

Recognising that his journey is far from unique, Steve took the decision to be open about having autism and mental health problems. He started a website, adultswithautism.org.uk, in response to the lack of information for adults on the autistic spectrum. This is created a worldwide community, providing support for adults with autism.

there is a massive disconnect between mental health services and effective mental health treatment for people on the autistic spectrum

Steve believes there is a massive disconnect between mental health services and effective mental health treatment for people on the autistic spectrum. He thinks that OCD symptoms, for example, are all too often considered to be no more than random autistic traits by medical professionals, and simply dismissed.

’There are differing opinions amongst doctors about whether OCD and autism can co-exist. One psychologist told me she would not give a diagnosis of OCD to someone with autism. Other clinical psychologists do not agree.’ But Steve considers OCD to be an anxiety-driven condition. ‘What do most people on the autistic spectrum suffer from daily?’ he says. ‘Yes – it’s anxiety!’

‘The words that do get through arrive in my brain like a scattered jigsaw puzzle that needs to be reassembled before I can respond to the person that’s talking to me.’

Individuals with autism spectrum disorders often face challenges with language and communication. Steve has auditory processing disorder which means that he struggles to process things that people say to him. This can be exacerbated when there is a lot of background noise. ‘Often when people speak to me, the sound of their words come towards me, but most of them evaporate before I’ve had the chance to fully grasp them. The words that do get through arrive in my brain like a scattered jigsaw puzzle that needs to be reassembled before I can respond to the person that’s talking to me. This takes time, and often, by the time I’ve worked out what I want to say, the conversation has moved on and I’m completely lost.’

‘I do not have the language and processing skills to fully understand what is happening during a CBT session.’

CBT is a talking therapy that can be useful for treating mental and physical health problems. Many readers will be familiar with CBT as this is the recommended treatment for OCD alongside medication. CBT did not work for Steve and he thinks that this is because of his language and communication difficulties. ‘I do not have the language and processing skills to fully understand what is happening during a CBT session. Autistic people can also have problems with inflexible thinking, finding it almost impossible to picture a situation that could have a different outcome from the one it usually has.’

Steve is highly aware of the relationship between his autistic traits and his OCD traits. ‘More anxiety equals more OCD, and more OCD fires up my autistic symptoms even more. This creates more anxiety leading to more OCD. The trick is to work out how to break this cycle.

Steve acknowledges that he doesn’t have all the answers, but he does recommend a few tips for supporting someone with autism, OCD and anxiety:

  • Find a style of communication that works for that person. Try to make your language as clear and unambiguous as possible.

  • Find ways to lessen a person’s anxiety.

  • Use a flexible approach – what works for one person, may not work with another.

  • Know that you may not always get an answer relating to the question asked.

  • Be patient

If you would like to read some of Steve's work, you can visit his blog www.adultswithautism.org.uk

 

By Kate Beatty