Response to the Australian Senate regarding the resolution to establish a Select Committee on
Autism
Cameron Boyd
Introduction
My name is Cameron Boyd, I am 25 years old from Albury and on the autism spectrum, and in this submission I will share my life journey and experiences, and provide my thoughts and recommendations on the terms of reference for the Senate inquiry into autism, based on my experiences as someone on the autism spectrum.
Autism is a very diverse condition, and every person on the autism spectrum is affected differently, with their own unique strengths and weaknesses. Likewise, every person on the autism spectrum has their own needs and requirements, which can be as unique as themselves. In my submission, while I will tend to focus on my own experience on the autism spectrum, and how it has affected me, my recommendations will be framed more broadly towards how outcomes can be improved for everyone on the autism spectrum.
My autism journey
My autism journey is a bit different to most in that I received my diagnosis at age 20, and not in childhood as is more common. While I have always displayed signs of being on the autism spectrum, this never proved to be an issue during my school years. it was only after my first employment experience that I realized there might be an issue and that I may need extra support to manage my condition. Since then, I have been fortunate enough to be able to receive the supports I need and have made many accomplishments as a result. In this section, I will share my journey from childhood to adulthood, and the challenges that I have faced at different life stages.
Throughout my early childhood and school years, I was always a little bit ‘different’ and felt as such, and displayed some of the signs and symptoms of being on the autism spectrum (despite being undiagnosed). For example, since the age of about 9 I have had a strong passion and interest in a relatively narrow subject, that being in my case Formula 1 motor racing. This was the same throughout both primary school and high school. However, I was always treated well by my peers (something which I have come to understand as being often an exception rather than the rule for someone on the autism spectrum), and was fortunate enough to have enough social awareness to ‘fit in’ as best as I could (not that this was always easy). I am very grateful to my teachers and peers for the support that I received throughout my schooling and believe that I would not be where I am today had I not received this.
The first time that I realized that there was an issue was in the wake of my first employment experience. One of the subjects that I had done very well at during school was Business Studies, and from there I became interested in accounting as a potential career path after my graduation from year 12 in 2012. Accounting cadetships/traineeships were heavily promoted as being the best way to get a foothold in the accounting industry as a high school graduate. At the time, the economy was rather weaker than has been in recent years, still feeling the after-effects of the GFC. This played on my mind, and I knew these roles were highly competitive, and as such that I applied for accounting cadetship positions far and wide, not restricting myself to the local area, in order to maximise my chances, such was my determination. In the end, I was successful for a position based in Lismore. This would prove to be a life changing experience, in both good and bad ways.
I was in this position for eight months. This was a very big life changing experience, as I had to learn independence and resilience at a rapid rate and to a level I had not had to do previously. Unfortunately, the stresses of this role wore me down mentally and emotionally, and I began to show more obvious signs of being on the autism spectrum
(a phenomena I now understand to have been autistic burnout- that being a situation where someone with autism starts to deteriorate and show more obvious symptoms). (MyID blog, 2019)
Furthermore, I was probably not best suited to this role, and was not a great cultural fit for that organization and unfortunately that all took its toll, increasingly so in the later months I was there. Despite this, I persisted, and remained in this job and in Lismore for eight months. A further complication for me at the time was that I did not have my driver’s licence, however, I managed to get my license in the final couple of weeks I was there, which was a significant accomplishment given the challenges I faced up there.
After returning to Albury, I continued with the degree that I had started during the cadetship via distance education, and experience that was challenging at times but also provided me with great flexibility. I completed this degree at the end of 2015, which was the time I also pursued my autism diagnosis. My experience in Lismore left me with a lot to reflect on, and it was from this reflection that I was able to join the dots and realised that I was indeed on the autism spectrum. Once I had my suspicions confirmed by a clinical psychologist (and a formal diagnosis provided), I found myself feeling liberated, knowing that I could now get the appropriate supports in place to succeed in future employment opportunities.
As I had graduated, I was once more in the job search process, and it was at my initial appointment at Centrelink that I was asked which Disability Employment Service provider I wish to be referred to. In that split second, I chose The Personnel Group, which in hindsight I believe to be the best split-second decision that I’ve ever made in my life (given where I am today).
Through the support and assistance of The Personnel Group, I found employment in May of 2016. This employer was aware of my condition and for the first few months I was rather successful in the role I had there. Unfortunately, after the fourth month, there was a structural change in the team that resulted my workload increasing significantly and unfortunately, a few weeks later, at the end of my probationary period, this employer chose to let me go. While upsetting at the time, it did set in sequence a series of events that has led to my current position and success.
In the wake of this, The Personnel Group found me a temporary role within their own finance team, performing some business analysis tasks. In the meantime, the Accounts Payable role within the finance team became available, and I was given an opportunity in this role. This proved to be a very good fit for me, and I was able to succeed in this role. I’ve been in this role for just over three years now, and in that time my role has
evolved significantly to what it is today. I am truly blessed to be able to work in such a wonderful team, and I owe a debt of gratitude for the opportunity that I was provided. Through this role, I have been able to achieve significant accomplishments in my personal life too, most notably that I was able to save up a deposit and buy a house in mid 2018.
Response to terms of reference
a) current approaches and barriers to consistent, timely and best practice autism diagnosis;
It is my experience that there are barriers that still exist in the diagnosis of autism. While I believe that this has gotten better over time, and that children and adolescents on the autism spectrum are much more likely to be diagnosed in a timely manner today, there remains a significant gap with the diagnosis of autism in adults (where this was missed during childhood). Indeed, this was my own experience, as my autism diagnosis was missed during childhood, and I received my diagnosis in early adulthood at age 20.
Furthermore, as autism is a condition that has only become well-understood in the past 25 or so years, it can also be expected that there are many older adults who are on the autism spectrum without even knowing it. It is very possible that these adults may not have been diagnosed with any condition or have been diagnosed with secondary comorbid conditions (without realising the underlying cause).
In my case, my diagnosis was a self-initiated process, and there was considerable expense involved in being assessed by a clinical psychologist. This highlights a gap in that this was not previously identified by a school counsellor or general practitioner, and that it was only through my own research and understanding that I was able to pursue and receive a diagnosis. As such, it is my recommendation to the committee that general practitioners and school staff receive more support to be able to identify the signs of autism in someone, so that they can then get the most appropriate supports they need.
b) the prevalence of autism in Australia; Recent studies suggest that about 1 in 70 people in Australia are on the autism spectrum. (EPIC Assist, 2019) This is a significant increase on previous studies, which indicated that the prevalence of autism was around 1 in 1000. This is a massive increase and can be attributed to improved understanding of what autism is among medical professionals and a broadening of the criteria for identifying autism.
As such, factors that have led to the under-estimation of autism prevalence in the past include:
-the under-diagnosis of autism in older people (due to the lack of understanding of autism in the past)
-the under-diagnosis of autism in females, and perception of autism as a ‘male’ condition, and,
-the potential for comorbid mental health conditions such as depression and anxiety to mask the underlying cause of the situation (that being autism).
Accordingly, I believe that the true prevalence of autism is becoming better understood in recent times, and that this improved understanding should hopefully lead to more appropriate support and better outcomes for people on the autism spectrum.
c) misdiagnosis and under representation of females in autism data, and gender bias in autism assessment and support services;
Traditionally autism has been perceived as a predominantly male condition, a misconception that has led to the misdiagnosis and under-representation of females in autism statistics. Unfortunately, as a result, it is more challenging for females to first receive a diagnosis, and from there receive the supports that they need. As such, given that there is now an improved understanding of autism (including the understanding that is not just a male condition), it is plausible that this situation should improve, and that more females with autism will be able to get the appropriate diagnosis in future.
d) international best practice with regards to diagnosis, support services and education, effectiveness, cost and required intensity;
No comment on this item.
e) the demand for and adequacy of Commonwealth, state and local government services to meet the needs of autistic people at all life stages;
Government services are vital to people on the autism spectrum in order to facilitate the supports that people with autism need at all life stages.
Services that government provides which are crucial for people with autism include:
-
education- it is vital that our schools are adequately equipped with the resources to identify children with autism early so that they can get the support and intervention they need at a young age
-
employment- most people on the autism spectrum will experience greater difficulty than the average person in finding and maintaining employment. The impact of this is that only 40% of people on the autism are employed, compared to 83% of the wider population. (EPIC Assist, 2019) As such, it is vital that employment support services (such
as the Disability Employment Service program) continue to be adequately funded and supported.
-healthcare- people on the autism spectrum will typically have greater need to use health care services during their lifetime. Specialist psychology services are critical in first identifying autism, and due to the frequency of comorbid conditions in autism, there will be ongoing demand for mental health and psychology services.
-housing- unfortunately, the shortage of affordable housing has a disproportionate effect on people on the autism spectrum. As detailed further below, due to the difficulty that people on the autism spectrum have in gaining and maintaining employment,
As such, it is my recommendation to the committee that government services in these four key areas receive slightly more funding than they do at present, with specific regard to autism, as while these services are generally adequate, there is still room for further improvement.
f) the interaction between services provided by the Commonwealth, state and local governments, including:
f) i) health and mental health, It is very common for people on the autism spectrum to have comorbid health conditions that are secondary to autism. In my case, I have also experienced depression and anxiety in the past, and still do experience the effects of this from time to time. In fact, I was diagnosed with depression and anxiety several years prior to my diagnosis with autism.
Research from the University of New South Wales suggests that the impact of this is that people on the autism spectrum have a mortality rate in adulthood that is double that of the general population. (UNSW 2019/ABC Ballarat, 2/4/2019) This is often triggered by loneliness and an inability to deal with the stresses of adulthood, and tragically leads to self-harm and occasionally suicide.
As such, it is vital that appropriate mental health supports are provided for people on the autism spectrum at all stages of their life. This should hopefully go some way to reducing the mortality rate in adulthood for people on the autism spectrum and at same time improving their quality of life.
f) ii) education, People on the autism spectrum can have a very mixed experience in education, depending on the individual circumstances. In some instances, schools can nurture and
support the inherent talents of those on the spectrum (knowingly or unknowingly) and allow them to flourish. In my circumstance I believe that my development was greatly assisted by my schooling experience, despite my autism being undiagnosed at the time. I believe that I was very fortunate to have such understanding teachers and peers, and that I would not be where I am today without the support and understanding I received. As such, I believe that children and young adults on the autism spectrum can succeed and flourish in the education system, when surrounded by supportive teachers and peers who are able to nurture their talents and respect their quirks.
However, it is an area of concern that (especially in the past) there have been many cases (such as mine) that were undiagnosed until later in life (if at all), and that the education system did not pick this up at the time. This would suggest to me that there may be many people out there on the autism spectrum who may not be aware of their condition, or, like myself, was only made aware of their condition later on in life. Unfortunately, we cannot change the past, but I am very pleased to see that in recent years the process for identifying and diagnosing autism in schools appears to have improved quite significantly, and children on the autism spectrum today appear to have a much wider range of opportunities, and better long-term outcomes, as a result.
f) iii) employment, In my experience, a person on the autism spectrum will struggle to gain and maintain employment in the absence of significant supports. However, where these supports can be put in place for someone on the autism spectrum, it is very possible for them to succeed in their employment.
The main barrier that exists for those on the autism spectrum is obtaining employment in the first place. The main cause of this barrier is the typical recruitment process that most employers use (i.e. interviews), which is heavily weighted towards those who are outgoing and naturally open with strangers. As people on the autism spectrum are typically much more reserved and introverted, they are at a disadvantage from the very beginning and will typically struggle in a job interview setting (regardless of how good a fit they are for the job). As such, work needs to be done to raise awareness with employers that their current recruitment processes can (inadvertently) create a barrier to those on the autism spectrum.
The second barrier relating to employment for those on the autism spectrum is being able to get through the first few months. In my own experience, this is the most difficult time in a job for someone with autism, as they are in a new environment and working with people that they are not familiar with. This can cause significant stress and anxiety, and
ultimately lead to the person with autism burning out and leaving their employment (either voluntarily or due to being terminated as a result of the consequences of their burnout and effect on performance).
In my case, I am fortunate enough in my current employment to work with some very wonderful people who are very understanding and accommodating of my quirks. I believe that my success at the Personnel Group is an excellent example of how someone on the autism spectrum can succeed in employment given a supportive environment and a few basic accommodations.
f) iv) justice, and No comment on this item.
f) v) housing; I feel that housing affordability is a major social issue across Australian society in general, however, due to the vulnerability of people on the autism spectrum, they can find themselves disproportionately affected by this. There is a clear link between employment and housing. To be able to afford housing typically you need to be in employment, and as people on the autism spectrum experience significant barriers to employment (as detailed above), there is a subsequent flow on effect and these barriers also exist to finding suitable housing.
In my personal situation, I experienced housing instability at the age of 18 when I moved to Lismore for my first job. This resulted in me initially having to live in a caravan park as I found myself shut out of the rental market. While this was much more I consequence of my age than anything else, it left me with a great appreciation of how difficult it can be to find affordable housing.
I am truly fortunate to today be in a position where I have bought a house and am currently paying off a mortgage. I wholly credit my current employment situation as having enabled me to be in the position where I have been able to achieve this.
g) the social and economic cost of failing to provide adequate and appropriate services, including to support key life stage transitions of autistic people;
The most challenging key life stage transition for people on the autism spectrum is that from adolescence into adulthood. During the school years, children on the autism spectrum are on a generally equal footing to their peers, and able to take advantage of the same opportunities as anyone who is not on the spectrum. However, when it comes to finding employment, adults on the autism spectrum are not on an equal footing. As
detailed above only 40% of adults on the autism spectrum are in employment, compared to 83% of the general population. This is a massive gap, and there is no doubt in my view that this has a huge social and economic impact. I also believe this to be a contributing factor to the high mortality rate among people on the autism spectrum, as those who do not have any form of employment are more likely to experience more severe loneliness and isolation.
h) the adequacy and efficacy of the National Disability Insurance Scheme (NDIS) for autistic people, including:
h) i) autism understanding within the NDIS, In my personal experience as someone on the autism spectrum, I have not received any information from the NDIS or the local coordinator in this region on what supports I may be able to access. While I am fortunate enough to be in a position where I do not require a lot of support right now, I am concerned that should I find myself in a position in the future where I require supports that these would be difficult to access (indeed, as it stands I am uncertain where the best place to start would be to access these supports). As such, my recommendation is for there to be a straightforward process for people on the autism spectrum to engage with the NDIS, even where they are not currently requiring support, so that should they require supports at some point in the future these can be provided in a timely and efficient manner.
h) ii) the utility of the Early Childhood Early Intervention Pathway for autistic children,
No comment on this item.
h) iii) the ability of the NDIS to support autistic people with complex needs, including those transitioning from prison settings, and
The NDIS, to the best of my knowledge, has been effective in ensuring that supports are maintained for people who have existing support arrangements in place, and as such for those people the NDIS provides adequate support. However, where these support arrangements are not in place, I am uncertain as to whether the NDIS can be used proactively to support these people (especially if they do not have a good understanding of what supports they may be eligible for). My recommendation in part i) of this section also applies to this term of reference.
h) iv) the adequacy and appropriateness of supports to empower autistic people to participate in the NDIS planning process, and exercise self-determination through choice and control over their support services;
No comment on this item.
i) the development of a National Autism Strategy and its interaction with the next phase of the National Disability Strategy;
I welcome the proposed development of a National Autism Strategy and believe that this can provide significant benefits to improving the lives of those on the autism spectrum. As such, it is my recommendation that a strategy developed needs to focus on these key areas: -whole of life support, especially in key life stage transitions (such as from adolescence to adulthood)
-maintaining and coordinating government services that support people on the autism spectrum
-improving outcomes in employment, and reducing the unemployment rate, and,
-improving social integration and supports for people on the autism spectrum.
j) the adequacy of funding for research into autism; No comment on this item.
k) the social inclusion and participation of autistic people within the economy and community;
People with autism often struggle with social inclusion. As someone on the autism spectrum, I speak from personal experience when I say that it can be very difficult to remain socially active within the wider community. There have been numerous times in my life where I have been rather socially isolated, and even today, I would consider myself to be somewhat isolated socially outside of a work context.
Lack of social inclusion can lead to loneliness, depression and anxiety, which are key risk factors for suicide. As such, it is vital that people on the autism spectrum are socially included and able to contribute in the economy and community. The best way to accomplish this is through employment, so accordingly it is vital that more is done to reduce the very high unemployment rate among people on the autism spectrum.
l) the capacity and sustainability of advocacy, self-advocacy and self- determination supports for autistic people, including mechanisms to self-represent to government as enshrined in the United Nations Convention on the Rights of Persons with Disabilities;
No comment on this item.
m) any bill that relates to matters within the scope of this inquiry that is referred to this committee; and
No comment on this item.
n) any other related matters. No comment on this item.