NCB podcast #1 - growing up with autism

In January 2020, Joe Fautley spoke to us about growing up with autism and how he hasn't let him hold him back.

 

Watch the video or read the transcript below:

29/1/2020

Hello my name is Joe Fautley.

Being on the autism spectrum means for me that I'm not able to do everything on the same level as most neurotypical people can do.

The key areas of my autism are focused on difficulties of social communication, social interaction, sensory processing, life skills and high anxiety.

However, despite these challenges my autism has also gifted me with an important strength of memory for study.

I was diagnosed on the autism spectrum at the age of seven; the process of diagnosis took around 18 months. this was originally acknowledged due to me not reaching my childhood milestones for example I had major delays in walking, speech and coordination.

It was agreed by my parents and the specialist school which I attended at the time that it would be beneficial for me to have a form of autism assessment which would be carried out by a clinical psychologist and a speech and language therapist.

Often throughout my life I've asked myself is having a formal diagnosis of autism positive or negative? For me personally I believe a diagnosis is extremely positive as it has enabled me over many years to develop a good understanding about autism and how it impacts me on a personal level.

This this then enables me to think about strategies for better managing some of my autistic characteristics, for example sensory processing.

When I was younger and during my teenage years I was very negative about having autism as it was more apparent during my school days as I knew I was different to most of my peers. I found it difficult to cope with my artistic challenges and didn't speak openly about Autism.

After leaving the school and becoming an adult I started to view my autism differently as I realized if this was taken away I would not have my own unique personality. Now today I enjoy having the opportunity to speak about being on the autistic spectrum also it's enabled me to continue with higher education and gain two degrees in History.

When I'm faced with stress or anxiety my brain often switches off from real moment events and I can often zones out which means for me that my mind wanders. This is a natural process due to my autism and I often feel it's a coping mechanism of the brain for dealing with stress.

This connects with one of my key autistic characteristics which is difficulties with sensory processing. I encounter these challenges on a daily basis and it's more intense when I'm in loud places such a supermarkets which always triggers high

anxiety as my brain finds it extremely challenging to filter out background noises. In this situation my brain automatically switches to zoning out which then makes me unaware of what is happening around me. This can cause problems as I do not always hear with or acknowledge when someone speaks to me. This can also cause particular risks with safety for example not being aware of the surrounding area who when crossing roads.

I often feel the world is unpredictable and confusing. I find it difficult to process information at a fast pace. I prefer a daily routine to help me know what to expect as this helps me prepare for the day. If something was to change I like to have advance warning. I encounter anxiety on a daily basis and this impacts on my everyday life and anxiety stops me from doing many things that neuro-typical people can do. For example, I have a fear of crossing roads and currently I'm not able to travel anyway on my own. I know it requires someone who I feel comfortable with to support me throughout all journeys. I become very anxious when in crowded environments.

My anxiety at times leads to extreme tiredness when I become highly anxious. I always need time and a quiet space where I can calm myself and de-stress which helps me to be more prepared for future situations. If I'm not able to have sufficient time and space to de-stress my anxiety will increase and cause a sensory overload experience.

Being able to de-stress is essential for autistic people. My favorite ways to relax includes visiting places of nature and when at home listening to nature sounds and calming music. For me personally managing fatigue can be a difficult process especially when I've had a stressful day. This can often be made worse because it happens suddenly.

When this happens I always need time to rest and adjust. However if there are times when I do not have the opportunity to rest effectively I can become unwell.

An interesting way of how I describe my fatigue is the cup of water analogy. I picture my energy as a cup of water that I have to carry all day and I start the day and the cup is full but as I move through the day the water in the cup gradually splashes and spills until eventually every drop is gone and when it's gone there is no more water left. There is no way to fill up the cup again: I have to wait for the start of the next day when my cup of energy will be full again.

Something I have come across about my autism is the misconception that if you have succeeded in education then you don't fit the criteria for everyday life skills. For example I went to my local centre which provides assessments for people with disabilities.

My parents and I showed evidence to a member of staff there as I need a lot of support with everyday life skills around the home and traveling.

The staff went through the questions and initially said that I did fit the criteria for accessing support and they were putting me on a mailing list to hear about different events.

|However near the end of the meeting I was asked about education and I said that I was doing a history degree at university this then completely changed everything and I was told that I no longer matched the criteria. This was incredibly frustrating for me as I was not allowed to access to supports which I felt I was entitled to because of my education. Despite showing detailed evidence they disregarded my difficulties and life skills

These are some examples of my hopes and dreams for the future. I would like to continue with my studies and hopefully gain a PhD in history one day also I would like to know enough life skills and social skills to become independent and this would then greatly help me being able to travel for different purposes including maybe University, work or for holidays.

Also to manage my anxiety better and for my traveling I would love to explore different places around the world with support including across the United States and Canada. And also one of my big dreams is to go outdoor skydiving.

These are some important final messages to conclude. Autistic people face many extensive challenges because the social world is not designed for us. Autism needs everyone in society to come together and have an understanding. We are not broken, we are unique.

Autistic people have many important strengths and great potential to succeed through their own personal talents with the right support from people who take the time to listen and understand our individual needs.