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What does an Autism diagnosis mean? It is known as Autism, Autism Spectrum Disorder or ASD.
If you researched most medical definitions, they generally define Autism as a life-long neurodevelopment condition” that causes issues or deficits in areas of social communication, repetitive patterns of behavior and sensory sensitivities, including the way the person perceives and processes information. This does not truly describe how Autism affects nearly every aspect of an individual and their families’ lives. It affects how they perceive what they hear, read, observe, their perception of what personal hygiene entails, it impacts their sleep patterns, their comprehension, their abstract thoughts and reasoning, their education, employment opportunities, their mental health and their personnel relationships just to mention a few.
Most professionals and services dismiss the term life-long and only focus on the provision of early intervention services and programs. Many of the autistic community miss out on these early interventions because they are not diagnosed until late primary school or much later. Often the diagnosis is a result of some other external factor impacting their lives — it may be a life transition, it may be lack of friendships or an insight that they are very different to their peers or worse a suicide attempt because they hate their lives.
These same individuals mature into teens and adults, they do not attract the same level of care and support. The perception in the community is that the early intervention available is sufficient. This is despite the World Health Organization acknowledging Autism is life-long and requires significant lifelong care and support of the Autistic individual and their families. While there is a strong focus on supporting children diagnosed with autism, a gap exists in post-diagnostic support with older children, teenagers and adults.
Many people are aware of the word Autism but most are ignorant to what autism actually means to the individual and their families/carers. Many assume that defining a person by Level 1, 2 or 3 outlines the person’s capacity, but this is misunderstood and creates judgment, prejudice and assumptions which then causes more problems for the Autistic individual as it makes it hard on every level both for themselves and their families. This is a massive misunderstanding that is setting our individuals up for incorrect support.
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To help clinicians (and others) better describe individual cases of autism, the creators of the official diagnostic manual (DSM-5) developed three “levels of support.” Clinicians are expected to diagnose people with autism at level 1, level 2, or level 3. These levels reflect individuals’ ability to communicate, adapt to new situations, expand beyond restricted interests, and manage daily life. People at level 1 need relatively little support, while people at level three need a great deal of support®
“If you’ve met one person with autism, you’ve met one person with autism.” — Dr. Stephen Shore *
Many professionals (including health professionals) find the Autistic community quite challenging to understand, support and work with. Orygen Youth Health Clinical Program (OYHCP) is a public mental health service providing specialist mental health care for young people between the ages of 15 and 25 who live in the northwestern metropolitan region of Melbourne, Australia. At OYHCP, an audit of clinicians’ knowledge and confidence showed that the care of individuals with ASD and psychiatric comorbidity was experienced as challenging. Clinicians reported low confidence in providing interventions, and perceived less progress during episodes of care than when working with neurotypical young people”
Unfortunately, all of these issues compound together and are reflected in the 2018 Australian Bureau of Statistics report Autism in Australia’:
¢ 205,200 Australians diagnosed with autism, a significant increase of 25.1% from 2015. ¢ Males are 3.5 times more likely than females to have the condition
- 92.3% of young people (101,900) aged 5 to 20 years on the autism spectrum attending school had some form of educational restriction (92.3%), including a small number who were unable to attend school because of their disability. Two in five (40.8%) of the children attended a special class in a mainstream school or a special school.
¢ Of the 106,600 young people (aged 5 to 20 years) with autism who were attending school or another educational institution, 77.7% reported experiencing difficulty at their place of
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learning. Of those experiencing difficulties, the main problems encountered were fitting in socially (59.8%), learning difficulties (55.3%) and communication difficulties (51.5%).
¢ In 2018, two in five (40.4%) young people with autism required special tuition and 32% needed help from a counsellor or disability support person, while more than one in four (28.5%) did not receive any additional assistance (excluding attending a special school or special classes in a mainstream school).
¢ Almost half the young people with autism aged 5 to 20 years (45.9%) indicated they needed more support or assistance at school then they were receiving.
¢ Autistic people are less likely than others with a disability to complete an educational qualification beyond school because their needs for support differ from people with other disabilities. Of those with autism, 8.1% had a bachelor degree or higher, compared with 16.1% of those with a disability and 31.2% of those without disability. Only 19% of Autistic people go on to complete any formal qualification.
¢ In 2018, 68.9% reported having a profound or severe core activity limitation, that is, they need help or supervision with at least one of the following three activities: communication, self-care and mobility.
¢ 44% of all people with autism had a profound or severe communication restriction, requiring assistance to understand or be understood by others. The need to use of more effective types of communication including the use of sign language or other forms of non-verbal communication.
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36% of all people with autism had a profound or severe self-care limitations requiring support when dressing, bathing, eating or toileting.
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61% of autistic people require assistance with at least one activity on a daily basis.
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39% required assistance with cognitive and emotional tasks at least once a day. ¢ It is important to note that the bulk of care was provided by informal carers (relatives or friends), in the core activity areas of self-care, mobility and communication.
¢ 170,100 autistic people reported that they did not receive some or all of the assistance they required.
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¢ 51.7% of autistic people indicated they required help with at least one activity. The unmet need for assistance was highest for cognitive and emotional support (61,000 people), communication (30,100).
Why did the Different Journey’s program evolve?
“Without DJs we would return to a state of severe social isolation. “
‘You gave us a safe place of inclusion and gave our young person a social outlet to practice and learn new social skills and adapt to new environments in a space where his sensory needs are understood and accepted.”
Different Journeys was born as a need rather than a want. Two parents couldn’t find any supports or services for their teenage children. Merrin Ayton has two Autistic young adults and Mel Spencer has three. Both Merrin and Mel were dealing with teens who were despondent, exhibiting signs of low self-esteem and were becoming more and more withdrawn from their peers and community. At school, no one wanted to be their friends. They were bullied and ridiculed because they were different. Their children just wanted a friend, to find a tribe that they could hang with like other teens, be invited to birthday parties and other social events organized. Their parents faced with this dilemma were heartbroken. As a parent you just want to protect your child, wave the magic wand and make everything alright. The parents of autistic children feel powerless because there is nothing they can do — they can’t make the other children like their child, they can’t make the other children look beyond their autism awkwardness to see a really nice, amusing kid.
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Within the mainstream schooling system Autistic individuals among other things are isolated, bullied and often struggle to make and maintain friendships. US studies report that 63% of children on the autism spectrum report that they have been bullied at any time. Many are often aware they are different to their peers, lose confidence and withdraw from interaction, further compounding their isolation and increasing anxiety and depression. It can be a horrible struggle for them. The Australian Bureau of Statistics (ABS) report that only 19% of ASD teens, upon leaving school go on to acquire any form of formal tertiary qualification or trade.
Although both families have the same diagnosis of Autism, their journeys have been very different. Merrin was able to access early intervention for her boys; however, Mel’s children were not diagnosed until much later, missing out on that opportunity to receive critical early intervention and support for her family.
Co-founders Mel and Merrin found that their teens didn’t quite fit into the ‘normal’ activities of same aged teens. Raising a child with ASD means that you have to parent differently. Things which other parents take for granted have to planned and prepared for. Behaviour management, language modification, how the child processes the information, responds, interacts with their peers. Autistic individual’s reactions and responses can be delayed, they may over react or don’t react at all, their responses can be inappropriate, they can over read or misread a situation, or just simply become so overwhelmed that they cannot function. A parent of an Autistic child/teen/adult is always on edge ready to respond to diffuse any situation
Merrin and Mel found that their teens didn’t fit into the majority of the wider community disability activity programs. Often the program’s focus catered was for teens with intellectual and/or physical disabilities, so their Autism was not catered for. If they attended these activities, there weren’t other teens with similar interests that they could converse with. So, they once again were socially isolated, stuck in the middle between the two different groups, not fitting in to either.
Even though their autism journey was vastly different, this was not an acceptable scenario for Merrin and Mel, so they decided to start something themselves. They didn’t want their children to
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become another statistic; they wanted them to have access to the education and job opportunities like their peers.
Both Merrin and Mel felt it was essential for their teens to learn the strategies and develop the resilience to rise above the obstacles placed in their way. The only way to do that was to work to build up their self-esteem and then direct them on a different path through the maze of adolescence.
Why is the Different Journey’s social event different to other groups?
“Since going to Different Journeys M has felt part of the world and is now blossoming into a positive and happy adult. She volunteers at an aged care facility which she loves and goes to gym twice a day.”
Together Merrin and Mel have created an event that teenagers could access in a safe and supported environment where they could come together with similar minded individuals, make friends, learn to navigate ‘going out’, ‘hanging out’ and find ways to connect with their peers, find a ‘tribe’ reducing their social isolation.
Merrin and Mel quickly discovered that there were other Carers and Parents of autistic teens who were facing similar issues, these parents quickly identified with the opportunities this new social support group presented.
In 2007 an overseas research study found that Parents of Autistic teens had the same stress levels as those of combat soldiers.’ In 2019, an Australian research study found parents whose children had autism, found 18.6 percent of the sample group met the criteria for a provisional diagnosis of Post-Traumatic Stress Disorder (PTSD). Parents at greater risk were those whose children displayed ‘challenging behaviours’ which are behaviours that are not socially acceptable including self-harm and physical aggression.®
As such, the ‘Different Journeys’ autistic teen social group, became an opportunity for parents/carers and siblings to also come together to learn from each other and offer support.
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The teens didn’t want to be seen going to therapy environment or more formalized social skills groups. They wanted to do similar things that others in their age group did. So, Different Journey’s has created an event with an environment that caters for their needs without them realizing that there is formalized therapy occurring behind the scenes.
Everything about this program has been done in consultation and collaboration with our community. Starting with our logo, which was designed by another autism mom. We have carefully created and captured a community constantly trying to improve their lives through using their voices.
How does this program benefit the Autistic Teens and Adults?
In all levels of society there is an expectation of how people should behave, respond and participate at work, formal and informal social settings — anything behaviors outside these norms is frowned upon. For the Autistic community, compliance with the all the hidden rules associated with social conventions is such a challenge. Their autism combined with the wide difference in their functioning capacity makes it hard so much harder for them to conform and fit in- they are being set up to fail. So the gap between the expectations and reality for the autistic individual grows larger. This is where the Different Journeys event programs are unique — they specifically cater to support and assist the Autistic teens and adults.
By attending the Different Journeys events the journey of the autistic teens, adults and their family/carers
is made better by connecting them with peers, meeting other peers, other carers, other families and services. Different Journeys events help them to make new connections to wider community so they do not feel so alone.
In simple terms, the Different Journey’s autistic teens and adults:
¢ are choosing to leave their house
e¢ they have the freedom to connect with the broader community on their own level ¢ they are engaged
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¢ they are learning the social conventions including social communication- (how to eat out, order a meal, learning to wait in line, how to take turns, winning, losing) ¢ are learning transferrable skills which can be adapted for other situations or environments
“Different Journeys has made a MASSIVE impact on our whole family. The tireless work of those involved in DJ is absolutely commendable.”
How has Different Journeys grown?
Different Journeys is a for-purpose organization of Autistic people and their families and supporters. Since our beginnings, we have grown significantly and received limited funding to assist us to expand the program.
From March 2019 — March 2020, Different Journeys delivered the following peer support events:
¢ 17 teen (up to 120 per eent)
¢ 17 adult (up to 80 per event)
¢ 10 Autism Family Swim nights (up to 100 per event)
¢ 1 Autism Family Camp (180 people)
¢ 6 Parent information evenings specific to adults and teenagers (up to 100 per event)
¢ Up to 64 online zoom social an peer support hangouts over a 2 month period (up to 500 people)
Note: Due to COVID-19, Different Journeys was unable to deliver face-to-face events. Different Journeys created an online Social Club, which included Carer information sessions and teen and adult social hangout group sessions. This is currently being evaluated and supported. The impact of Covid 19 has yet to be established. Within the autistic community they have lost the ability to control something in their life and when it resumes it may be harder to get them back engaged. Once Australia is “back to normal” the community is left with trauma, increase in mental health/psychosocial issues etc., all at different degrees. This means the community will not be able to ‘pick up’ where they left off. This autistic community will have more barriers and the assumption they can dust themselves off and simply get a job is unrealistic.
“Different Journeys is one of the best things that ever happened to me. Why | hear you say?
Because | have made so many great friends since going to the dinners. It took a while to find my
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friends at the dinners but once | did my world changed. In my everyday life my friends come to my
house for parties, game nights, bbqs, Christmas parties, New Year’s Eve. We go out to places
together , movies, game places and things like that. Friends drop in . This didn’t happen before. | am
so grateful to you for giving me this opportunity. You found my tribe and invited me to meet them. Thank you. “
Attendance to our Different Journeys events has been so successful, that the majority of the events have are sold out. This increased popularity has come at a cost - the numbers attending the event reached a point where the committee felt it struggling to manage effectively, it was felt that the teens and families were not receiving the ‘Gold class’ service that they had experienced when the numbers were less and the volunteers felt overwhelmed as they tried meet the demands placed on them by the community. Reluctantly the committee reduced the attendee numbers for the events as acost to our community. It has created more demand to attend the events - reflecting the desperate need of the autistic community for these types of supported events.
Although initially created by Merrin and Mel to create safe opportunities for their autistic teens, the program has been further expanded to include another event for Autistic adults’ and their families. The Different Journeys programs are catering to needs of a larger sector of the autistic community, helping them to engage with other members of their community or tribe”.
“We change their worlds.” “We exchange isolation, prejudice and ignorance with connections, hope and community. “
Different Journey’s’ identified the need for Autistic adults to have the same opportunity to access a peer support event. As such, Different Journey’s introduced a similar program that was specifically tailored to cater for the Autistic adult. Different Journey’s also recognizes that the carers of adult autistics also have nowhere to go to connect in with support and advice. This has become a big focus of these Different Journey’s adult events.
Creating training and employment opportunities within the Different Journey’s community
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“Thank you, Different Journeys, for everything you bring to community!”
Within our event’s autistic individuals and their carers are invited to participate to support the event. ¢ Volunteer role - where Different Journey’s provides training and up skilling for the Autistic individual and the carer. ¢ Volunteer Allied Health Professionals are an important part of the committee. They provide the committee with an essential insight from the eyes of the Autistic individual as a client not from the parent’s perspective. They provide the committee with an overview — strategies to help participants develop social skills in a supported therapeutic environment. ¢ Paid role — where the Autistic individual or carer completes specific training related to their role on the night. They are then paid for their services on the night. ¢ Allied Health Professionals attend our events and provide advice and information regarding registration for the NDIS, services which can be accessed, support programs, etc. ¢ Networking and partnering with other local community organizations to create further opportunities for our Autistic community to connect in with potential employment roles.
Different Journey’s Operational Programs
- Different Journey Peer Support Events At present, Different Journey’s run four peer support events each month in two locations:
¢ Melbourne — Greensborough and Kilsyth
¢ An Interstate event in Sydney. Our Sydney adult peer support event is run in partnership with the Autism Community Network (ACN), based in the South Eastern Suburb Riverwood. Our Sydney event captured the eye of ABC and was featured in a recent 7.30 report.
- Autism Family Swim Nights 10|Page
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At present, Different Journey’s run two ASD family swim events each month in two locations:
Knox Leisureworks with Belgravia Leisure and Knox Council
Kilsyth Centenary Pools with Belgravia Leisure
Different Journey’s has recognized the need to support the younger autistic individuals through our Autism Family Swim nights. These events are run in partnership with Belgravia Leisure and Interchange Outer East. The Autism Family Swim event has the pool closed to the public and is only open to the Autistic community.
The aim is to encourage all to come to the facility to create connections and build rapport with others (peers) including the swim center with the hope of building transferrable skills so the individual(s) feel confident to utilize the swim center’s facilities during business hours; whilst subtly promoting water activities and sports.
Many parents have commented that the environment is a safe, non-judgmental environment including the other people within it; so, they can relax, enjoy themselves and watch their child have fun rather than micro-manage to prevent sensory overload, meltdowns and others judging them who do not congruently understand.
“From very early on in life my daughter felt outcast among her peers. Kids are, by nature, ruthless in weeding out any person who is different and excluding them, sometimes in a cruel way. This led to incredibly hard times. Then we discovered Different Journey’s. You helped to save my girl’s life.”
Different Journey’s success since 2016
Since DJ began in 2016 our impact has been extraordinary — this is not just for the attendees. Different Journey’s empowers, encourages and celebrates the wins, no matter how big or how small. These include:
¢ Watching the simple joy on parent’s faces as they witness their teenager being social with others rather than sitting in their room, home alone and withdrawn.
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- Carers have an opportunity to learn from watching other family interactions (e.g. different approaches to manage the melt downs, teen anxiety). It is often the first time the families realize that their journey is not unique, their family is experiencing the same issues, just like other ASD families. Families have the share their experiences, strategies, issues and quickly discover that they don’t have to try to face this journey on their own. Many parents and carers have stated that they have learnt a lot just by listening, asking questions and watching those carers and families who have older ASD children.
¢ The ‘Different Journeys’ team report learning’s through observations and informal inquisitive questioning of the carers and teens to develop a true understanding of the right needs, interests like and dislikes of the teens attending the night. The team after each event debriefs to share their experiences. We also liaise with the service agencies to alert them of the any new needs, concerns, likes and dislikes of the teen, carers and families.
¢ Autistic individuals have an opportunity to learn from observing others within the events environment (role modeling). Not only do they learn from like-family interactions but also they realise they are not alone nor do they have to go through something on their own.
¢ Many individuals that were initially reluctant to attend, highly anxious and spent much of the first part of their peer support event by themselves watching, are now active group members, who have developed close bonds with new friends. They now look forward to each month’s social get together and greet their new friends excitedly.
¢ We have a group of young men last year that were all able to have 21sts last year because suddenly they had friends to invite.
¢ Four of the teens have now felt confident enough to appear in an educational film together through Maroondah Youth Services about people with disabilities called “Different Yet The Same” (viewable here https://www.youtube.com/watch?v=ei–Jfhk51M).
¢ Many parents and carers have gathered information about funding and how to access a multitude of services (both financial and emotional) that they never knew existed.
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¢ Some families have brought along their non-ASD siblings. It has provided the siblings a unique opportunity to observe a different side to their sibling as they interact with their new friends, laugh without abandonment and participate in social situations. This has provided both the ASD teen and their sibling an opportunity to discuss, engage and bond regarding the night. A social activity they can now both happily share.
¢ Families are reporting that they are now able to go out and socialize because they feel more confident. The act of choosing and ordering a meal of food for the teen was no longer an issue. Through attending this group, the teen has learnt the social protocols for ordering a meal. The teen, in the supported social group environment, was made aware of what to expect, so that next time in the “real world” they could confidently order their meal, because they knew what to say, what to do and what to expect. These are just some of the transferable skills that the social group is helping to build in both the teens and the carers.
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One teen, who had withdrawn from school 14 months earlier, gained enough confidence to recommence their schooling. Coincidently, some of the new friends at the teen dinners also attended the same school.
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One teen felt confident enough to give their first ever public guitar performance, having refused to ever play it outside of their bedroom previously.
¢ Many of the teens have found that tub of games and activities (eg Trivia quiz each night) are run ina format that they then see replicated at their school. Prior to experiencing it at the ‘different journeys’ Teens ASD social dinner night, they would never have joined in at school. The teen now feels more confident about how the quiz works and joins in enthusiastically with a sense of pride and achievement.
¢ Majority of the carers report that the teen’s attitudes to school, school attendance and
academic performance have markedly improved since participating in the group.
‘Attending several activities and camps that DJ have organized has provided an amazing link for us to the local ASD community, not only support for our 3 ASD children, but also for us as parent
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carers.”
Different Journey’s impact on the Autistic community
“Different Journeys are essential and are providing a much needed opportunity for teens, adults and families.
They truly are changing lives for the better and | hope they continue to deliver Different Journeys
social gathers in Banyule and that they have an opportunity to expand beyond their two municipalities.”
“Different Journeys are my go to reference for people on the spectrum looking for social opportunities with those who have a shared lived experience.”
Different Journeys saves lives, help to build communities and empower autistic people and their carers and families by:
¢ Running socially inclusive peer support events, peer support forums and ASD family swim nights
¢ Providing carers and families with non-judgmental understanding, fellowship and information
¢ Advocating and linking people into services and supports which saves lives and make people healthier
¢ Educating the community, government instrumentalities, community services, businesses and people with ASD
Providing safe, supporting introductions to a range of therapeutic allied health supports.
Our proven partnerships with local councils — Maroondah, Yarra Ranges, Knox and Banyule; along
with our other partners — The Resilience Project, | Can Network, Interchange Outer East, The Misfit
Project, Belgravia Leisure, Club Kilsyth and Greensborough RSL, shows that we enjoy working and collaborating with others.
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We don’t have all the answers but together we can all work collaboratively making this community better and more inclusive. We are also role modeling to our autistic community that there are many people trying hard to support them.
We have learnt through these processes that there is a want within the autistic community (including families and carers) but often they don’t know how. We are simply trying to create opportunities for an ordinary life.
“Different Journeys are essential and are providing a much-needed opportunity for teens, adults and
families. They truly are changing lives for the better and | hope they continue to deliver Different
Journeys social gathers in Banyule and that they have an opportunity to expand beyond their two municipalities. Different Journeys are my go-to reference for people on the spectrum looking for social opportunities with those who have a shared lived experience. They have 100% integrity in
what they offer and it comes from a genuine place, again, of lived experience. | hope NDIS continues
to support and facilitate the great work of Different Journeys. Taking them away from community is like removing a wheelchair ramp to a building, this work is that essential and because ASD is an invisible disability, it’s often not given the resources and long-term investment required. Thank you, Different Journeys, for everything you bring to community!”
Different Journeys is actively working to:
¢ to provide a broader range of services to more people to change more lives by:
- partnering with the LGBTQI community to deliver LGBTQI inclusive ASD events
- expanding the number of locations and types of events we run that foster connections, build peer relationships and grow skills
¢ helping more carers return to work, and helping more people with ASD find work
¢ helping more families constructively engage with the NDIS and government and non government service systems with a focus on mental health, education and employment
However, we are reliant on volunteer and good will of many. We pride ourselves on offering a service where people feel valued and supported. We currently have carers being offered employment often for the first time in over 10 years. Being a small grass roots start up volunteer group, we find that much of our time is spent on providing help and support to our
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families and our events. The struggle the committee is facing is to devote the time and resources required to make improvements to the program, develop marketing strategies which will help up ensure our financial sustainability for the future. What is becoming more evident is as Different Journey’s continues to grow, the need to provide these services is becoming more important. Finding the time, resources to better support our growing autistic community comes at a cost — our small volunteer committee is required to spend more time away from their own families, working tirelessly often without any acknowledgement or reward.
We believe our model works and want to take it to many more locations and use it as a stepping stone for many autistic individuals and families to connect and reduce the sense of isolation and find ways to become empowered and belong. We also know that our volunteers are unable to continue to devote their time and resources without future remuneration opportunities.
‘| have felt very much alone during the last four years. | was so isolated and caring for a son who
was very frustrated and suicidal. He was at times violent and abusive. There must be more isolated carers out there like me?”
Different Journey’s participation in the National Autism Strategy
We welcome the opportunity for a National Autism Strategy.
Currently the autistic community and services are very fragmented and create division. It’s divided into levels of support (i.e. what level of autism), monetary support, good will of others and none with the direct and same focus. This is a barrier for the autistic community to adequately know how
to access and support services. This also increases if you are part of a minority cohort such as Aboriginal/Torres Strait Islanders, LGBTI or CALD communities.
Barriers to accessing services include:
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e Lack of congruent understanding regarding how to effectively understand and support autistic individuals and families — including all levels of government, all areas of health, all areas of employment, education and housing
¢ Lack of service and supports for teens and adults
¢ Lack of service and supports for the community
e¢ Lack of ASD focus or specific parental support for autistic teenagers and adults. A number of services offer generic support but due to the lack of understanding and knowledge of ASD, these services often state the situation is too complex
¢ Lack of understanding, services, support and strategies for Autism and Psychiatric (Mental health) comorbidity - including the lack of training and confidence of professionals to support and assist the community
¢ Lack of appropriate supports needed and individualized;
¢ Lack of holistic, coherent and bone fide services working collaboratively together such as education, NDIS, mental health, employment, housing; and
¢ Lack of financial support
As you can see the biggest issues for the Autistic community is barriers.
¢ In terms of the disability community a barrier is often defined as an attitudinal, organizational or systemic, architectural or physical, information or communications, and technology which restricts of prevents their access.
¢ Barriers our autistic individual could face include:
¢ Many try to fit in and try to mask their Autism/Mental Health and will not necessarily seek the service they require. We would like to see more ASD specific training and confidence building strategies so these issues can be clearly identified and minimized by professionals allied health, medical, teachers, disability services, etc.
¢ Many Autistic individuals do not engage with sport for a variety of reasons and require exercise subtly built into their lifestyle. The ideal would be to see funding allocated for exercise programs with Allied Health professionals - Occupational Therapist, Speech Pathologists and Physiotherapist/ Exercise physiologists employed for these programs.
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Service access — Health/Medical. The biggest debate exists within this area, is Autism and Mental Health. Anxiety is a mental health condition or psychiatric comorbidity that is
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intertwined with Autism, yet no expert in the world has been able to identify how to separate Autism from the Anxiety. Nor can the individual separate their Autism from their mental health condition or psychiatric comorbidity. However, it appears services can - the disability sector generally identifies the Autism but not the Mental health/ psychiatric co morbidity stating it is a medical issue and the Mental Health Professionals advise it is too complex and often do not assist. The National Disability Insurance Scheme (NDIS) contributes to this argument, often advising Mental Health is medical and therefore they are not funded by the NDIS. However, Community Mental Health service will not assist the person as they are in receipt of NDIS. Often the Community Mental Health provider does not understand that the individual has not been funded for psychosocial disability or will refuse access due to their belief that Autism and mental health conditions are too complex, without any consideration for the Autistic individual or their families. We request better consultation between all levels of government (including COAG), all services, education and alternative services provided. We believe the Different Journeys events model can be used to better support the autistic individual and their families.
¢ Service access — NDIS. There is a barrier within the NDIA & LAC staff with regards to Autism as a whole then when you include psychosocial disabilities. Feedback from carers and participants is that that NDIS staff are often ill equipped to understand the complex needs of the autistic individual. It is essential that the NDIS acknowledge and understand that Autism whole of life neurodevelopmental condition, affecting ALL aspects of that’s individual’s life.
¢ Service access — Autism and Mental Health. No expert in the world has been able to identify how to separate Autism from mental health conditions. As such many health professionals do not understand the intertwined relationship of Autism and Mental ill health. Some of the stories we are told quite frequently is that many of our autistic community have been exited from services because the provider did not know what to do; given complexity of dual diagnosis. They are often also walking away with another diagnosis which didn’t need to be there if the clinician understood the autism diagnosis. For example, a diagnosis of Oppositional Defiant Disorder simply because the individual refused to speak with the provider, even though it was a new provider and rapport required a lot of time. Members of our community have contacted all of the Mental Health Peak bodies including PHM’s and the information is the same, they do not work with this community, it is a concern but not a focus and deem them too complex; despite the large amounts of funding. Even the National
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Mental Health Commission deemed these issues a concern but not a focus. The Certificate IV in Mental Health Peer Work has no course content that covers Autism, dual disabilities nor co-morbidities.
We would like to see organizations do a congruent skills audit, training including those who have lived experiences and implement best practices - if another diagnosis is recommended it should go through a multi-staged panel. We see the Mental Health Peer Work course updated to include Autism and mental health conditions. We want to see funding put into services and organizations that are providing services that are decreasing mental health risks.
“This is a shocking wake-up call for society, when a significant section of the population feel that
they don’t belong in the world. As a society, we urgently must do more to value neurodiversity. This
could ultimately save lives.
9, 10
Dr Cassidy from Coventry University (supervisor of 2014-17
research)
Service access — Autism and Trauma. Experts are starting to identify and acknowledge trauma (including traumatic incidences) and the impact it has on an Autistic individual but the Education department, NDIS, Mental Health Professionals and Disability service providers, does not recognize it. We want to see a holistic approach taken and congruent trauma-informed care training and services. Training should also be available for communities providing services as these communities have a lived experience and are deemed more trustworthy by the community.
Service access - Autism and Suicide. Many children (as young as 8), teens and adults are attempting to take their own life for a variety of reasons but all are linked to their Autistic traits and/ or their mental health. Many will not be provided with inpatient assistance nor specialized services due to their Autism. This leaves many families who are not professionals to be on 24-hour suicide watch. These individuals and their carers and families cannot utilize phone or online services such as Lifeline as their scripts and counseling techniques are not compatible with Autism, and parents have reported that the counselors have stated they didn’t know how to help because of the Autism. We want to see services provide more ASD specific access but more importantly provide support (including ASD specific) to the families who have been told to be on suicide watch, including providing counseling (including ASD
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specific) to these families. We want to see phone and online services have specialists in Autism and suicide.
e¢ Service access — Autism Carers and Families. As previously stated, the stress of Autistic families is at the same level of combat soldiers. As many carers and families have individuals in receipt of the NDIS they cannot access respite or counseling. Many currently access mental health care plans but it is limited and there is still a gap fee (which can be quite expensive). These families require Autism specific services including counseling and respite. Many current services are quite generic and are not applicable or helpful to these carers and families. We want to see respite and Autism specific counseling services at a free or low cost.
¢ Recommendations - World Health Organization (WHO). WHO has stated Mental illness can be more common for autistic people than the general population. It acknowledges support for both the Autistic individual and their carers and families. The mental health of Autism is often overlooked. Please implement the recommendations of the WHO.
¢ Different Journeys welcomes the opportunity for a National Autism Strategy and looks forward to hopefully representing our community to actively be involved in helping shape this.
¢ The current societal challenge of COVID-19 is causing significant challenges to the society as a whole but in particular to the Autistic community. This vulnerable community faces social isolation on a much larger scale than the general population at the best of times; however, it is even greater now with the impact of COVID-19 such as forced restrictions and the community’s response to it.
“Without DJ we would return to a state of severe social isolation, would not have a network of peers that our young person could continue to develop and maintain social relationships with and we would not have access to invaluable education and networking resources in order to continue to support our young person the best we could.”
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RECOMMENDATIONS: in no particular order
Peer Support
More funding is required for peer support, particularly relevant to local communities.
More funding for peer support organisations such as Different Journeys. Currently relying on goodwill, volunteering and high burnout rates shows that these peer support groups whilst good are not sustainable. Imagine the opportunities that could be created by supporting organisations such as ours — greater reach, greater opportunities, and greater possibilities. Within this peer support advocacy, mental health, services, education, ndis, where to access a diagnoses, housing, employment just to name a few. This also helps with social inclusion and participation of autistic people within the economy and community.
Advocacy.
There needs to be more flexible options for advocacy with an autism specific understanding — ie the hidden disabilities.
We also help create awareness within society about what to do, how to support our autistic community bye working directly with mainstream services. Our role is simple compared to those that are funded for advocacy — we have lived experience, we understand, we can show them advocacy in a way that empowers them to eventually be able to do it for themselves — lived experience is vital in the advocacy sector. We also are flexible to the individual needs of the person we are working with to deliver services through different channels — face to face, phone, video etc. But we need two voices — one for working one to one directly with autistic individuals and families, and one to speak on behalf of the community to government, councils, other services and support. We represent the voices of many.
Individual advocacy is really lacking that is understanding and autism specific. Often those so-called peak bodies that you automatically ring send you on to other organisations, so it becomes more burdensome for those seeking support. Also those organisations are often whole disability specific covering many wide ranges of disability. Autism is unique and specific and doesn’t fit into a mould. It needs a dedicated advocacy organisation that can also attend in person and help people by modeling to them different ways to communicate, behave, and question to ensure that their voices are heard. For many disabilities you can see the disability and therefore can adjust/adapt
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accordingly. Autism you can see, you can’t understand and therefore we make assumptions without understand and often we set this cohort up for failure instead of success.
One such question always remains particularly with these peer groups is the topic of Intellectual property and as such needs to be clarified. For example our program embeds the culture, value, attitudes, connectivity, consistency, consensus and democracy across the board for every event we run. But it another person was to pick up our program and try to run it they may be missing elements, so it may not be a truly effective program. They are missing certain “ingredients”
More investment needs to be placed in community who are working for the community.
Families
This ties in with peer support — more funding for the family unit, but more options available to encourage families to seek & use supports. This includes the family as whole, young carers and the parent carers.
As stated in the report the families also run into hurdles. There needs to be a holistic support for families who often feel judged and then turn into themselves because they cannot find the right help or support or don’t know where to go. Having fun as a family is something that is often missed in the fight just for survival. This also includes the siblings — There are great organisations such as Little Dreamers out there but we need to collaborate better.
Mental Health and Autism
There needs to be greater funding and support put towards the connection between mental health & autism, particularly focused on areas that encompasses whole of life stages.
More recognition and support within this very gray area. As documented in this report, this is a large gap and needs to be addressed. Currently the whole autistic community is suffering because there is no dedicated support and understanding. This would involve more training to those working in the space, within the universities and other training institutions as a core part of any course, better pathways so that the autistic individuals and their families come back with choice and control and feel empowered to help their own recovery. This would also help with the social and economic costs of failing to provide adequate and appropriate services, including supporting key life stage transitions of autistic people. This could involve using the autistic voices to be involved in training, accessing community and letting people hear the stories and create more understanding and support. This also has to flow on to include the families, who don’t need to be ridiculed, judged and
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isolated. They need a wrap around effect that includes them. They are doing the best they can with the supports on offer.
Education & Employment
investment in Life skills first and foremost before we focus on education and employment. Drive change in our standards to support this community more.
The statistics are alarming but establishing the whys is much needed. Why is there high unemployment in this cohort despite many having capacity to work? Why is the education drop out rate so high? Does this mean schools are not catering for the unique and diverse learning styles of the autistic individuals?
These situations need to be addressed before we can actually see results. We need to create settings with school environments that can help support families of where to go — community access points. Everyone accesses a school, whilst the focus is education, we can also build on community access. There are a lot of good things happening within the community but many people don’t know about — this liaison person could be a conduit between community, families, and education. It could be researched to see its significance
Many of our autistic community are expected to simply go and get a job but people assumed these individuals have everyday life skills and do not even consider some could have barriers. Barriers include but are not limited to walking out of the house, utilize video chats, have a bank account, use an ATM card to name a few.
So with this idea we require an approach that addresses all of these barriers in a holistic approach to ensure life skills are developed and maintained to be able to become independent and participate socially and economically. This is where the NDIS can play a huge role. Also perhaps it is re questioning society standards as to what is acceptable. There is a dignity of risk in everything we do, but doing something is better than doing nothing.
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NDIS
An investment in training, within the NDIS staff cohort, about understanding Autism and the impacts of what you can’t see. We need to transfer these negatives into positives to show what is possible.
The NDIS has great responsibility into changing the current status and coming back to simple basics first and foremost that are measurable for success.
Deliver training and awareness with staff about autism and the whole of life stages and how it impacts everyone differently particularly in regards to dual diagnosis. Support and understanding the impacts on the family and that they too require support. Finding ways to understand and support complex needs where there is a diagnosis of autism and ensuring that it is not always the outwardly violent outbursts that there are many other considerations to factor in. Also finding ways to include and empower our autistic individuals so that they feel heard, empowered and motivated to want to be the best they can be with the right supports.
This may be involving them in the planning process, getting them to understand their own choice and control and what they can do.
We also need the LACs to be better informed about what is happening in the community. They need to work within their local communities supporting autistics and liaising with mainstream services to help them support and understand the benefits of having autistics come onboard with employment. There also needs to be understanding and awareness for the role of carers and the challenges for it.
Early Intervention
Early Intervention should not be age dependent. It should be whole of life.
Early intervention should not be when the autistic individuals are children. Early intervention should be available for anyone recently diagnosed. There should be no timeframe on this. We need to change the focus of these words. It is proven that early intervention has greater chances of success for the individuals no one is questioning that but why is it only available for those diagnosed as young children. We need to formulate a plan so that when anyone is diagnosed regardless of age, they are offered the same support and services. There also needs to be other options available because as we Know everyone is different and so are their needs.
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Overall national peak — Developing an a National Autism strategy
A National Autism Strategy should be developed that is consistent across the country that supports whole of life, families, overseas research, education, peer support.
This peak body would have a snapshot into the autistic community — what is happening by way of research, education, ndis, support groups, holistic services that work that could be replicated nationwide for the benefit of the autistic community. This may also increase employment opportunities for both carers and autistic individuals. It would also show what is working and what is not and perhaps why. It could show gaps within the community that could by easily addressed or put more funding towards it. It could be a centered voice for our community highlighting the successes, challenges and recommendations for improvement instead of the current fragmented and splintered group. It could also see where more funding is needed as well.
It will be a combination of both systemic advocacy and peer advocacy. One such solution is to combine some of the larger organisations to create an autism alliance that is focused on strengths based rather than solution focus. The challenges with peak bodies is that they lose their community focus so tying into to grassroots organisations and supporting them to hear the best evidence of what is happening is very important.
We could then assume best practice models with regards to diagnosis, support services and education, and effectiveness, cost and required intensity. We could also more holistically look at a whole of life approach that is supported by everyone with a consistent approach.
CONCLUSION
Autism is by far the most diagnosed disability worldwide. We now need to come on board and support this community to have the same opportunities afforded everyone else in our society.
We have an opportunity through this federal inquiry to be able to effect change by listening to the voices of the lived experience, celebrate what we are doing well, but effect changes where there are gaps or mistakes being made. This is a time to make change - change those statistics that we currently see — offer and engage more opportunities to ensure that the autistic community have the opportunity to lead ‘an ordinary life’ and contribute to the society they are a part of.
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References
1 Dr Anastasios Galanopoulos, Dr Dene Robertson, Ms. Debbie Spain and Dr Clodagh Murphy. This
information is drawn from an article that first appeared in the Mental Health supplement of Your Autism Magazine, Vol 8(4), Winter 2014.
2 World Health Organization, Meeting Report: Autism spectrum disorders and other developmental disorders; From raising awareness to building capacity, 2013
3 Dr LGarbi, (2019), What are the 3 levels of Autism? Retrieved from: https://www.verywellhealth.com/what-are-the-three-levels-of-autism-260233
4 Stephen Shore, Leading Perspectives on Disability: a Q&A with Dr. Stephen Shore (2018) Retrieved from:
https://www.limeconnect.com/opportunities news/detail/leading-perspectives-on-disability-a-qa with-dr-stephen-shore
5 Angus, B; Monson, K; Fleming, M; Grant, R; Kentmann, C; Mitchell, J (2014). Working with Young People with Autism Spectrum Disorder and Comorbid Mental Disorders. Retrieved from: https://oyh.org.au/sites/oyh.org.au/files/ASD-manual_0.pdf
6 Australian Bureau of Statistics, 4430.0 - Disability, Ageing and Carers, Australia: Summary of Findings (2018)
Retrieved from: https://www.abs.gov.au/AUSSTATS/abs@.nsf/Lookup/4430.0Main+Features102018
7 Diament, M (November 10, 2009). Retrieved from: https://www.disabilityscoop.com/2009/11/10/autism-moms-stress/6121/
8 St Clair, R; Disability Support Guide (2019) Retrieved from: https://www.disabilitysupportguide.com.au/talking-disability/parents-of-children-with-autism-may be-at-greater-risk-for-ptsd
9 6 Risk markers for suicidality in autistic adults Sarah Cassidy , Louise Bradley, Rebecca Shaw and Simon Baron-Cohen. Cassidy et al. Molecular Autism (2018) 9:42 https://doi.org/10.1186/s13229 018-0226-4
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10 Suicidal ideation and suicide plans or attempts in adults with Asperger’s syndrome attending a specialist diagnostic clinic: a clinical cohort study: Sarah Cassidy, Paul Bradley, Janine Robinson,
Carrie Allison, Meghan McHugh, Simon Baron-Cohen; Lancet Psychiatry 2014; 1: 142—47 Published
Online June 25, 2014
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