Submission to the Select Committee On Autism
Geraldine Robertson
April, 2021
Advocacy
My name is Geraldine Robertson and | have been an autistic advocate since my diagnosis in
2000. After experiencing extreme discrimination from autism advocacy groups, three advocates, including myself, decided that we could not rely on support from others to present an autistic perspective to issues which affect us. We began a small systemic advocacy group named ANSA. In 2008 we affiliated with ASAN in the USA. The Autistic Self Advocacy Network Au & NZ has grown to become a significant influence on autism policy and politics in both Australia and New Zealand.
Systemic advocacy experience:
e Founding member, board member and chair of the Autistic Self Advocacy Network.
e Australian Autism Alliance: In 2019 members of the Alliance went to Canberra to present a case for developing a National Autism Strategy. Our goal was to change the abysmal outcomes for Autistics in Australia.
e Consultant for ASPECT: Preparing Disability Access and Inclusion Plan for the organisation.
e Autism Advisory Board — Tasmanian Government
e Australian Autistic Research Council: During 2020 focus groups identified five research priority areas (Communication, Education, Employment, Health & Wellbeing and Justice). More details can be found at Australian Autism Research
Council (AARC) | Autism CRC
e Autism Tasmania — Board member, chairperson and consultant.
e Positive Partnerships —Autism Advisory Board.
Individual advocacy experience:
e Supporting individuals in the areas of health, mental health, justice, education, personal development and employment.
e Future Leaders mentor — Leadership program for Autistic adults.
e Autism Tasmania: Peer Support Facilitator (volunteer), Co-developing NDIS
sponsored peer support group.
Statement:
Since 2000 I have had considerable experience in supporting children and adults in accessing community systems which provide support for Australian citizens. Far too often, my services are required to assist in accessing organisations, both government and private, which sometimes deliberately and often inadvertently have inclusion barriers for autistic people. While most of these can be addressed via the Disability Standards, some, which are due directly to the characteristics of autism, are difficult for non-autistic people to understand and apply to their practice. In 2019, AMAZE conducted a survey with the findings that although 85% of Australians know an autistic person, only 29% believed that they knew how to support them. Autistic adults believe that 4% of their communities know how to provide support. This has enormous implications for every area of living, including education, health care, justice, housing, leisure, work, family life and self-advocacy in general. To mitigate the negative impact of a general lack of autism understanding, it is important to understand why these difficulties arise and consider instances where the intervention of advocates modifies negative outcomes or provides a positive experience.
One of the characteristics of autism which has an enormous impact on accessing communities is communication. There are over 1000 genes considered to be involved with autism, resulting in a large range of communication challenges and differences, but a difficulty we all share is that of reading and displaying standard body language. This makes up over 65% of communication. Furthermore, autistics often use language in idiosyncratic ways. Their utterances may not be easily understood, even if articulation is perfect. Another issue is prosody. Sometimes the rhythms of autistic speech are mistaken for intellectual disabilities or even attributed to being drunk or on drugs. It is also common for Autistics to process spoken language differently, with a need for instructions to be posed in short, simple structures and allowing processing time so that the individual can internalise what is said, or to provide written complex or unfamiliar instructions. To demonstrate the challenges, I will describe some scenarios.
Employment:
H. had a B.Sc. but was unable to find suitable employment. He obtained a position in a plant nursery but was about to be sacked for being lazy. Like many autistics, B. had difficulties with spatial awareness and was slow to perform the task of stacking empty flowerpots on a shelf, ordered by size. As he was so bright, his employer thought he was being lazy and stubborn, refusing to speed up after a second demonstration of what needed to be done. His parents asked an autistic advocate for advice. The solution was to paint the colour coded outlines of the 3 sizes of pots on a bench top so that H could rapidly match the pots and place them in the appropriate colour coded site on the shelf. His work speed improved rapidly. In addition, other tasks were customised for H and these changes also assisted other employees. During the time saved, H began to manage the garden centre website, which gave him great job satisfaction.
Justice: A young man, J. looking at lights through his fingers and describing the patterns in a mechanical and monotone voice, was asked by the police to move on. He did not understand why and demanded an explanation. After instructions made in official language,
J. became confused, flapping his hands. The police placed him in protective custody, which
was technically the correct thing to do, but J. did not know what protective custody was. He became frantic with fear, not knowing if he would go to prison or how long he would be detained. It would have been helpful if the young constable had recognised flapping as a sign of autism and understood that he should speak in short, simple sentences that J. would understand. In reality, J. injured his face when banging his head against a cell wall and required surgery and ongoing counselling after the experience.
T. was summonsed to appear in court after failure to follow a police directive, which he did not understand. His lawyer advised him to plead not guilty after the advocate helped T. to explain the situation. On being called before the magistrate, T. suddenly started yelling that he was guilty. He demanded to be charged so that he could pay the fine and go home. This was sparked by sheer terror at an unfamiliar situation, stressful for most people. Nothing that the lawyer or magistrate could do would change T.’s mind about pleading guilty. The autistic advocate was permitted to speak with him - the information that a criminal record would prevent this man from entering Japan to attend anime and manga events (special interests which dominate his life) provided the reason to persuade him to cope with the court case so that justice could prevail.
Health: B, an obviously intelligent autistic woman, had a significant health issue made worse by failure to follow her GP’s instructions. At the end of the consultation, B. asked the GP if she could write the instructions down. Blinded by her strengths, the GP told B that the instructions were simple and that she would not need to do so. B. was too ashamed to tell the GP that she could not remember what he had said. B’s parent engaged the services of an autistic advocate to go back to the GP, explain the situation, that verbal instructions with unfamiliar language would not be understood and should be provided in a written format.
M had experienced poor dental health. He was afraid to go to the dentist because his dentist asked him questions during treatment. While most people are a bit wry about the feasibility of answering questions during treatment, M was distraught. Like many autistic people, he had been rigorously trained since early childhood to answer questions using eye contact and specific formats and was frightened that the dentist would punish him if he did not provide formal answers. The solution was a simple explanation to the dentist, who agreed not to ask questions when his fingers were in M’s mouth.
L. was admitted to a psychiatric ward. He was frequently restrained for not following instructions. His autistic advocate explained to staff that he would follow instructions if they were provided in the format of Reason followed by Instruction. The problem was that if L. did not want to follow the instruction immediately, his processing speed, which is often slow for autistics, did not enable him to make connections between instructions which could be negotiated and those which could not. Giving the reason first, for example, “Someone is upset and needs space. You need to go to your room immediately.” resulted in a rapid and appropriate response to staff members who listened to the advocate. Those who continued to give instructions without reason, or followed by reason, continued to need to apply restraints.
These scenarios demonstrating the consequences of not understanding autistic communication can be awful and often cause trauma and ongoing harm While autism training is necessary, the complexity of autism means that it is unlikely that most people will understand the subtleties required to understand the motives, motivators and challenges experienced by this population. Even parents, with all their love and dedication to their children, often do not have those perspectives. All these scenarios were resolved by the intervention of an autistic advocate who will have experienced similar examples of autistic communication differences and the unpleasant consequences. The very deep understanding of autism acquired by many who live with the condition are proving to be a valued resource in supporting deeper understanding of autistics and therefore improving opportunities for community access. This understanding is now being tapped by many organisations with autistic advisory boards and autistic employees who provide a conduit between organisations and systems and the autistic users. Often these communications are facilitated by digital means, allowing remote access to those who can help to remove the barriers to inclusion.
.