Imogen Allen explains why beginning a new year at university can cause more worry than excitementWritten by Imogen Allen on 22nd September 2017
Autism: You’ve Only Met One Person
Sam Arrowsmith talks about his experience with High Functioning Autism and the impact it has had on his life
In February 1997, at the age of 2, in the office of Dr. DeLong at Duke University Medical Center , I was diagnosed with High-Functioning Autism (HFA). This is a condition that has had a major influence on the course of my life. This article is my recollection, alongside information obtained from friends and family closely involved with my development, of the events related to this diagnosis. To use a commonly applied phrase for these sorts of articles; my name is Sam, and this is my story.
What is Autism?
Autism is part of the autistic spectrum, which encompasses all Autistic Spectrum Disorders (ASDs). ASDs refer to impaired social, verbal and non-verbal communication, often with stereotypical repetitive habits and behaviours. Typical autistic characteristics are an inability to understand social cues and emotions, hypersensitivity, aversion to situational changes, compulsive behaviours and delayed development of communication skills (such as the ability to talk and recognise body language). HFA refers to autism with high intelligence.
I was often unable to put myself in other people's shoes and any intelligence I did have, I was unable to communicate in conventional ways. Although there are common traits across those with an ASD, there is also a lot of variety in personality and behavioural traits within autistic people. To quote Dr. Stephen Shore, "If you've met one person with autism, you've met one person with autism". People on the autistic spectrum are all different, with different severities of ASDs but also different mixes of the common traits. They are all unique, regardless of the specific diagnosis. I can only recount the experiences of one autistic person - me.
My Dad had his first consultant job in anaesthesia at Duke University Medical Centre. We seemed to be in the right place at the right time as Durham N.C. was the home of autism knowledge and understanding. She added that "thanks to the kindness and skill of the teachers and friends we found ourselves in the rooms of Dr. DeLong". Dr. DeLong was said my prognosis was good, particularly as he saw the loving interaction between myself and Mum. My Dad, on the other hand, was worried I wouldn't fully develop socially and intellectually. One quote from the doctor was "I'm not saying he'll still be in diapers by the time he's 18", but my Dad somewhat feared that I would be (he was never horrible about it, he was just a worried parent).
Commenting on her perspective on the situation, my Mum said "noticing Sam's reticence to speak, grandparents and extended family expressed their worry and nervousness in 'unhelpful' ways and a rift developed." The truth is that no-one really knew how I'd turn out. My Mum made a lifelong dedication to make sure that I would develop and that she would make the prognosis as good as possible. In her words, "I wanted him to participate fully in all of the ups and downs that we call life." My Dad was rather medical about the whole thing, but my Mum took a more alternative approach. Such was the general disagreement about this that my Mum and my Dad's parents ended arguing, which resulted in them never visiting us in the States and a wound that never really healed.
This was all happening around the time that Andrew Wakefield published his work on how the MMR vaccine supposedly causes autism, which resulted in widespread controversy, subsequently leading to him being struck off as a medical practitioner by the General Medical Council and the rise of the anti-vaccination movement. Although his work was later repeatedly discredited, this was a difficult time for our family, and a difficult time for families with children with ASDs.
The same Dr. DeLong, who diagnosed me, was testing out a theory about ASDs - that autistic children have a naturally low level of serotonin in their brains. So, as a toddler, I was put on the antidepressant fluoxetine (commonly known as Prozac), which one may be familiar with if they have or know anyone with clinical depression. After a week or so on the drug, my Mum took me off of it on the grounds that it messed me up. Whilst on the drug, I apparently became "more autistic". The effects of the drug appeared to my Mum as the epitome of developmental regression. From then on, my Mum vowed to take the alternative route.
The Alternative Route
She began to engage us with other mothers in a similar situation, who all spoke of the radical changes that were achieved when their autistic children were put on a GFCF (gluten-free, caesin-free) diet. This diet subsequently improved my health and in later years I found that I no longer reacted badly to caesin (dairy). My Dad, and other doctors, were sceptical as to whether this diet would work but I've tested myself and found that gluten makes me more hypersensitive and irritable, before concluding the week-long allergic reaction with the normal gastrointestinal response (i.e. "the runs").
“If you've met one person with autism, you've met one person with autism
My mum would make sure I did different activities every weekend and made sure I was experiencing life the same as any other child. She wasn't trying to ignore my condition, she was trying to get me out of developing unhelpful repetitive habits and mindsets. These techniques were part of the more active efforts to deal with my autism, but there was one element to my life that passively helped me so much, both in my development and life in general - my sisters.
Lulu is 18 months younger than me, and Beth is about 5 years younger than me. Having two sisters meant that I had people of a similar age to socialise with at home. They both know about the positive impact they've had on my life, and will continue to defend against the negative stereotyping of autistic people. Having more socially adept siblings meant that I would inevitably learn how to interact with people, which was something I could translate when playing with other children and interacting with others later in life.
Back in the UK
I had a statement of Special Educational Needs by the time I started school back in the UK, and I always had a TA up until the end of GCSEs. I often had appointments with a speech therapist, Janet, who I've recently got back in touch with. I recently caught up with Janet to ask what exactly it was that we did during these session that I started when I was about 7, which finished when I was 14ish, although she added, "It was not continuous. Blocks were booked when there was a specific issue or there was a transition". I was told that the focus was mainly social communication and social thinking. Part of this was something called the "Stop, Think, Do" Programme, which involves exercises designed to train children to recognise the problems being faced, think about potential responses and their consequences and then to execute the best option. Very kindly, she also informed me that she felt "honoured to work with me" and that "You can only recognise things in others if you have those qualities within you. Many teachers did not recognise those qualities in you."
My Mum highlighted some other areas of treatments that I was taken through when we were back in the UK, including a therapist whose work centred around inhibited childhood reflexes, occupational therapists, music therapists, specialist teaching assistants and two very demanding sisters, all of whom have pushed me and inspired me to come out of the autism shell.
When I started school, I became aware that I was different from the other children. I used to make a real scene about having to leave the house, and I remember kicking and screaming on my first day of school. I often ate lunch alone, or with my teachers, and sometimes with my mum. Throughout my school days, I always struggled with larger crowds, meeting strangers and coping with the misbehaviour of other children. There's often a stereotype about autistic people not being about to understand emotions and being unemotional, but I was the exact opposite. I cried a lot as a child, and I would still consider myself a very emotional person nowadays. Often it would be songs that we had to sing in assembly that would trigger me, beginning a very long but very rapid chain of thoughts which would eventually lead to imagining something sad and horrible happening.
I would also have regular meetings throughout my school days with my TAs, head of year, SEN coordinator and form tutors, along with one of my parents. It was easy for people to see I was doing well in school, and eventually the meetings just became a routine opportunity to chat with those closely involved. It was at these meetings that I learned what autism is. Like a lot of autistic children, I couldn't stand being around lots of people and I hated loud noises. Bonfire nights were a nightmare for me. I still find that I can either listen to fireworks or see them, never both - i.e. there was so much information going into my brain that I either had to cover my ears or shut my eyes. Theatre trips to London were pretty hellish, and there was no way I was going to interact with theme park entertainers or actors in-character. PE was always going to be challenging - I'm not sporty and I never liked being shouted at by other children on the rugby pitch.
I recently asked my secondary school TA, Donna, what she remembers of my time at school. She told me that in Year 7 I was "easily upset over small things such as your pen marks smudging when you moved the ruler away" and that I found the "attitude and behaviour of those who showed no work ethic or motivation" difficult to deal with. She added that I "couldn't understand why they would want to sabotage their own education and the education of others." However, I relaxed a lot more during the years at school. Just before I started sixth form, I got a letter, stating something to the effect of "your amazing GCSE results and progress has meant that you no longer require a statement of special educational needs". In other words, on paper, I was no longer autistic.
In all honesty, I would never say that I'm autistic today. There are, however, still things I do that could be considered slightly autistic. I still find some loud noises sickening, and I still feel very anxious before going to house parties or pre-drinks with people I've never met before. I still feel very insecure at times, even just when walking in the streets. There is also a concern that the likelihood of developing depression is somewhat higher in those with ASDs. I have had depressive episodes, especially as a teenager, and occasionally have them now. However, I feel I know myself well enough to think about what it is that has got me down and I try to deal with it as practically as I can. This sounds clichéd, but I feel I am in touch with my emotions and consider myself an open person. Any idiosyncrasies I exhibit today are more likely part of my personality, rather than being directly autistic.
“Having autism is not a defining quality of a person and will never fully limit the potential they have
The main point of this article is that this is just one story, but I hope it gives some insight and a bit of inspiration. Awareness of ASDs is continually on the rise. A rather touching example of this is Sesame Street recently adding a new autistic character, Julia. When Big Bird thinks Julia's automatically doesn't like him, Abby Cadabby simply replies with "She does things just a little differently, in a sort of Julia way." Autistic people continue to contribute positively to our lives, from scientists such as Dr. Temple Grandin to creative types like Dan Harmon and Dan Aykroyd. Having autism is not a defining quality of a person and will never fully limit the potential they have. I'll wrap up with a quote from The Curious Incident of the Dog in the Night-Time by Mark Haddon, where the main protagonist is an autistic teenager;
“And I know I can do this because I went to London on my own, and because I solved the mystery…and I was brave and I wrote a book and that means I can do anything.”
For anyone reading, autistic or not, child or adult, familiar or unfamiliar with ASDs, I have a bit of advice I'd like to give. Take time to reflect on what's happening in your life. Take the time to talk with those closest to you and allow yourself to think about what you can do next. If you come up with any ideas to positively impact your life, in the short or long term, just do it (I know Shia LaBeouf said this already, but he said with more of a fuelled frustration). Trying new things and just going for it have kept me going, despite initially appearing to be scary to the point of not making sense. How do you think I was able to write this article?