Select Committee on Autism Submission
Who Are We?
I am a Level 2 Autistic and a 48-year-old sole parent to my Level 3 Autistic, Non Verbal, Global Developmental Delayed son, who is nearly six years old.
I am an advocate and support person for families and individuals with Autism and would like to contribute based on our lived experience in the community, navigating day to day life, and the systems and processes most of us simply take for granted.
Generally, my son and I live a happy and healthy life, but the reality is we do not have any informal supports – only those that are paid for. We work hard to participate in as much as possible, but the truth is, it is exhausting trying to navigate everything. The toll, the overstimulation, stress and anxiety that results from doing “normal things” can be quite debilitating. As a result, who we are in private can look very different to who we are to others.
My son has significantly high support needs, even though he has an amazing demonstrated intelligence to those who truly know him and advocating for him to experience the life he deserves is exhausting for me as his parent. I feel he gets much better support than many of his similarly diagnosed peers,. which is a direct result of my consistent advocacy, holding professionals and systems to account, constant communication and pushing for more from people. Sadly, it should not be that hard for a child to have the quality of service and support he needs and deserves, given the support he receives in these early years sets a trajectory of his life outcomes in all areas.
The consistent advocacy for him gets quite debilitating for me given my own diagnosis and needs. I find myself communicating when I feel my communication is struggling and even wanting to adopt select mutism to recover, trying to build relationships when I want to withdraw and isolate, or reacting in ways that appear over emotional, because of being tired, feeling scared and anxious about possibilities, or feeling a lack of confidence his needs can or will be met. I have a lot of anxiety about my son’s safety, his future and life outcomes, as he relies on others to help him with all daily activities, which statistically makes him a target and high likelihood of experiencing abuse. It is frustrating to me that it is all this hard for him and for me, as his mother, advocating and caring for him.
One thing I am extremely passionate about is how tokenistic our society’s efforts are to be inclusive, not just with Autistics, but all people with a Disability. The general feeling by many is we should be grateful that people consider us when it comes to inclusion and be delighted with the token efforts demonstrated to include us. This happens around access to stores, businesses, recreational activities, education, work opportunities… it is literally everywhere. I truly feel inclusivity has become more of a political necessity, as opposed to a genuine commitment and desire to include people with a disability – which includes autistic people.
Select Committee on Autism Submission 1
Autistics are not given the same commitment to service, skills development, education, vocations or inclusion in social and recreational experiences, as non autistics.
It is from our lived experiences each day, that I want to contribute to this discussion.
Thank you for allowing us the opportunity to be heard and included in this discussion, rather than listening only to professionals or carers who are not autistic themselves, but claim to understand and know about us, often better than ourselves.
Select Committee on Autism Submission 2
Current approaches and barriers to consistent, timely and best practice autism diagnosis.
I was diagnosed in my adult life, and my son a week after his second birthday. This was expensive for both of us.
I had a strong sense my son was autistic even when he was a newborn but discussing this with professionals always led to me feeling like a neurotic and crazed mother. When he was about 12 months old, I sought help for feeding difficulties, and raised my concerns about autism. The paediatrician was dismissive, and made comments like, “he is making eye contact with me and the other child present”.
I went home and completed the numerous online early detection tools on the internet which all suggested an extremely high likelihood of my son being Autistic. I sent these to the paediatrician who referred us to the Child Development Centre (CDC) for assessment, but said she was really only referring because of my insistence and against her better experience.
Our initial appointment with a GP at the CDC led us down the path of an Autism Assessment, with the GP saying she was fairly confident he would be diagnosed with Autism – even at that young age. The waiting period was lengthy, and I was anxious about the lost time in relation to early intervention. As a sole mother on a meagre income at that time, I was determined to seek a private diagnosis, because I did not want my son to lose any early intervention support that may be available to him. He also was showing signs of needing significant support around communication, social and physical skills at that young age. I wanted to help him attain that quickly.
My son started therapy as a baby for various areas he needed support in and started regular Occupational Therapy and Speech Therapy around 18 months old, which I self-funded on my very meagre part time income. This encouraged me to find the money for that private diagnosis, which is expensive in Western Australia, because of the process required for Autism diagnosis here, with three professionals needing to agree to the diagnosis. I wanted him to get the early intervention he needed, and to receive the help available to fund that.
I feel diagnosis should be far less expensive for young and old, and much faster.
For children, early intervention is very important, and for families, that sense of identity and understanding of the difference autistic people experience is even more important for the esteem children develop about who they are, well into adulthood.
As an adult my diagnosis was the most healing experience of my life. It allowed me to understand why I struggled with education, relationships, opportunities in general, my emotional patterns and thought processes. I had always felt a deep failure and sense of being “broken” and was always searching for what or who would fix me. I felt unlovable and loathed myself. Understanding why I was different, everything seemed to historically fall into place for me, and my acceptance and appreciation of myself was a significant turning point in my life. This is why I feel so strongly that all
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children deserve the right to understand their difference, to find their “tribe” where they are understood, accepted and valued as they are, and this should not be only for those financially able to make this happen. The diagnosis process needs to be standardised all over Australia. Children with other disabilities should not be diagnosed with Autism to receive support services and funding to address their needs simply because it carries a higher support package. Any child requiring it should get the support they need, regardless of diagnosis or lack thereof). An incorrect diagnosis just to receive funding support, misrepresents autism and leads to confusion for many about what autism is. It almost waters down an autistic person’s needs in many situations.
I also feel that the number of adults that choose to “self-diagnose” tends to blur the lines of understanding about autistics. It concerns me that it is so widely accepted for people to self-diagnose and that be considered valid in many circles. There may be other support needs that are being overlooked as a result. A part of the diagnostic process is exploring other diagnosis in an Autism assessment. It seems there are a lot of Autistic adults with comorbid conditions – such as other mental health diagnosis, which typically requires a very different support process than the diagnosis of Autism, and professionals and the community can easily become confused about what is “autism” vs the other diagnosis that may be presenting. If diagnosis was inexpensive and more readily available, it would be a better thing for mental health in general, to have those people needing help getting it, but it would also help people understand what autism is, how to identify it, and how it manifests in various situations.
Everybody deserves the right to understand who they are, and why they are the way they are, regardless of age, or financial situation to pay for this.
Misdiagnosis and under representation of females in autism data, and gender bias in autism assessment and support services;
It is really difficult to be an autistic female in our society. The differences experienced by female autistics is poorly understood, even by professionals. Unless autistics present with the more classic male stereotype of autism, which many males are not even like, people tend to avoid talking about the diagnosis when it is shared or refute it openly.
I have found this extremely embarrassing at times when explaining to medical staff, professionals and people in general, that I am autistic. I am sure some professionals think I am making it up. They tend to brush over it like it was never said. Sadly, I rarely have the time or the energy to educate everyone who needs it, about how women on the spectrum can be extremely different to the male stereotype of autism. Usually a woman on the spectrum will be met with comments like, “everyone is a little bit autistic, or on the spectrum” which is disgustingly insulting, as it fails to acknowledge the day to day difficulties we experience that most people do not, as a result of being autistic.
To share your diagnosis with someone – especially a healthcare or therapeutic professional, and to have it “brushed over” or questioned for not appearing as obvious as someone with significant sensory needs, feels quite humiliating. We are
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living in days where Autism amongst adults is still expected to look like the classic autistic male child who has significant sensory issues, with social and communication stereotypes, and typically either an intellectual genius or intellectual disability. Lost autistic women are not considered, understood, or valued for the wide variation amongst us, or the similarities we share. Many autistic women are misdiagnosed as having other mental health diagnosis, simply because most professionals are not aware of or understand how differently autism can present in women.
This also means many small young girls are being incorrectly diagnosed, or not offered the support they may need in their early years, and so begins a tumultuous experience in education, relationships, social skills and sense of self for them.
Many women are being inappropriately medicated and treated for mental health issues when they are actually autistic, with many of those treatment approaches possibly making them more unstable and impacted negatively in the various areas of their life. Simply understanding that we are autistic, is incredibly healing in itself, because it offers so much clarity in the face of confusion about ourselves, our relationships and sense of self-worth.
International best practice with regards to diagnosis, support services and education, effectiveness, cost and required intensity;
Australia seems so archaic in approaches to support people with autism, with so many models working so much better in different countries. Here in Australia, ABA is hailed as the holy grail of support services, and yet we know through speaking with the Autistic community, that it has caused immense pain and suffering for autistics to endure this approach and has caused significant trauma affecting them for their lifetime.
Sadly, many parents, professionals and carers will argue the feelings of the autistic community about this approach and negate our experiences and testify that it is invaluable.
Most professionals do not even know options to support autistics of all ages and needs.
New parents will be told that intense and numerous therapy hours will be needed for their newly diagnosed child, which is not true. Targeted approaches based on individual needs, and family and individual values will always have much more impact than blanketing people with a general approach that is now heavily questionable.
Autistics are so individually unique that there is no way a single approach could work for everyone, or even most. People should be able to determine what supports them given their needs, priorities and values. Right now, there is really poor options presented to newly diagnosed families, and most research is undertaken on their own. Even after they have done their own research about opportunities, they may
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not have access to very many approaches here in Australia. This wastes a lot of time, is stressful and often expensive with services and professionals “peddling their wares” on vulnerable families who are “looking for a cure” for their child. Sadly, autism has become commercialised by service providers, individuals and organisations. This occurs from those professionals specialising in Autism diagnosis, right through to service provision and resources. Even educational institutions will pursue an autism diagnosis for the attached funding, which means incorrect diagnosis can occur in children, leading to them not getting the support they may truly need.
Understanding that autism is unique for every individual and with each person having such a broad variation of needs means this is a complex situation. Every person has the right to be accepted, understood and supported for what occurs for them at any point in time.
An area, often overlooked, that individuals with autism need at all ages, is practical day to day support to assist with therapeutic life goals. Young children will need support within families because parents often need a break from consistently supporting children with high support needs including working towards therapy goals, assisting in the development of independence skills, and just general supervision that all vary from non-autistic children’s needs. The repetition, patience and focus a parent is applying each day to their parenting of a child with autism to develop skills and milestones is more intense than most typically developing children. It usually occurs over a longer time with many independence skills being developed into teen years and adulthood. Most children have accomplished these skills prior to commencement of school. Children with autism need more intense supervision for safety as they are growing, and even into adulthood, as they have poor risk assessment abilities. Most children tend to develop these skills and a sense of autonomy much faster, so again, the focus and intensity from an autistic child’s family is greater.
Autistic adults continue to need support through their adulthood, to function and navigate their difficulties on a day to day basis, whether it be support around relationship building, social and recreational participation, life skills around caring for their home, managing anxiety, parenting their own children, travelling, learning new skills and interests, in their work… the areas autistic people need help in are all encompassing and often overlooked. we assume an autistic adult is more capable than they are. We may not see that they are not coping, or the stress, exhaustion, melt downs, emotional challenges etc they experience
This day to day support that is not with a therapist as such, is very important to most autistics, probably more than therapy hours for many, and is often an area that is brushed over by funding bodies and planning for support.
The conversations about Autism are mostly conducted by “professionals and carers”, as opposed to the Autistic Community. It is common to be dismissed for our opinions and experiences by these two groups in formal and informal situations, especially if we are trying to offer our experiences and it contradicts the feelings of carers/parents.
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Our experts and professionals should be upholding the experiences of the Autistic community, and putting their values and experiences forward, and fostering autistics as the “experts on autism”.
Earlier I mentioned that children are being diagnosed with autism, even though the diagnosing professional knows the child is not autistic, to gain access to funding and support packages for their needs that are considered to be better for the diagnosis of autism. This has been discussed in the media and professionals have acknowledged this has occurred.
All people with support needs, especially children requiring any early intervention support should receive it, regardless of diagnosis, or even in the absence of diagnosis. It is terrible that a diagnosis vs one’s needs determines the support people need and confuses people about what autism is. This has an impact on autistics.
At the same time, I am sure there are professionals not identifying autism in children and adults where it is – particularly females, or even in males where common stereotypes are not present.
National standardised testing by professionals who have continued to learn about autism and the evolving understanding we are starting to have may assist in this and help society understand more about the diversity, yet the similarities shared by autistics. We have so many autistic adults who are advocates in the Disability sector, it is crazy that we are not learning more about autism from the Autistic community themselves, instead of relying on experts who have merely studied autism, rather than those who have lived it in all areas of their life.
Services provided by the Commonwealth, state and local governments, including:
i. Health and Mental Health There needs to be a greater understanding of common comorbid diagnosis that occurs with Autism, and further discussion and agreement as to whether these are separate diagnosis to Autism, or are all parts of Autism, and are symptomatic of an autistic person’s presentation of autism.
There also needs to be a better understanding of how to treat autistics who experience anxiety, depression, burn out, or other mental health conditions, which may be more debilitating and impactful than their autism day to day, but not able to be separated in treatment and acknowledgment. There appears to be a huge separation of autism and comorbid diagnosis, and it is not possible to treat each condition without consideration of the other, as Autism is present across all areas of our lives. Practitioners are often focused on only treating one comorbid condition, when several diagnoses may occur, and Autism is so pervasive that it is difficult to separate when looking at treatment options and needs.
Select Committee on Autism Submission 7
My son has had multiple health issues and surgeries recently, and an example is where grommets were put in his ears, without consideration of the fact he loves water, and it calms him. He enjoys his bath each night, and his swimming lessons, and water is a huge sensory attraction to him. Due to sensory issues, he will not wear earplugs to allow him to continue his habits with water that he needs with grommets in his ears.
The doctors who determined his needs did not understand his needs as an autistic – and I am sure his needs as an autistic around water and sensory issues to wearing ear plugs is not uncommon for his similar autistic peers.
He recently had a dental surgery where the doctor administered a local anaesthetic to his mouth, even though he had a general anaesthetic. My son has extreme oral sensory issues which is how he ended up being treated as he was. Waking with numb lips and mouth was incredibly distressing for him, and he could not understand what had happened. He bit his lips repeatedly, which became severely infected and became a bigger issue than the recovery for his surgery and prior presenting issues.
The doctors failed to understand the sensory needs of an autistic child and made a decision which truly did not need to happen, and is not commonly done for the very problem that occurred with my son. It was an extremely distressing experience for him.
Often medical staff think by popping the “autism jigsaw symbol “next to our names, means everyone will understand the different needs of autistics receiving health care. Sadly, at that point, they stop listening, and their ego can kick in and they feel they know what is best. This would be fine, if they actually did understand autism, and asked a lot of questions to understand prior to taking action, but they don’t. Sadly, autistics are often met by “all knowing” professionals who are in a hurry to do their work and forget the person in front of them does not have the same coping mechanisms as most of their patients.
As an adult woman who is autistic, I feel fortunate to have a good GP compared to most, but I have numerous health issues at the moment, and my experience of health challenges is often different to others, as I have a high pain threshold, yet am very aware of sensations in my body, so seem hyper aware of things going on at times that others have no awareness of. Explaining this to a professional will leave me feeling a little crazy, even though I am an intelligent, articulate and well researched person with professional skills that allow me to convey my full experience efficiently. It comes down to professionals not understanding how autism works, and how variably it can work for different autistics, and how to engage with us respectfully.
There needs to be a massive education for professionals about Autism – from autistic people – who can demonstrate the similarities and the differences we all experience.
Select Committee on Autism Submission 8
ii. Education Education inclusion has come a long way since I was at school, as has the prevalence and acceptance of neurodiversity in the education system, but having my young son attending school now, I am significantly discouraged for his future based on what his educational experience will be.
My son attends a school I am very happy with and has an amazing teacher and supports at school. I truly am a raving fan of these professionals who nurture him on a day to day basis and partner with me to support him in his early education years.
Having said that, I am extremely anxious about his progression, when the “system” determines his experience, vs the individual people who are currently fostering this because of the extraordinary people they are in their lives.
I see IEP requirements that are time consuming for all involved to tick boxes for funding and supposed accountability, that truly are insignificant to a student’s outcomes, and observe inclusion and commitment to academic experience being exceptionally tokenistic in nature.
My son is very intelligent as agreed by his educators and all that know him, but he is autistic, and will not test well, which is the nature of many autistic people. That does not mean he cannot learn or be taught. It also does not mean that he should not receive the curriculum opportunities his same aged peers receive, in a format and way that allows him to learn best for him.
Expecting autistics to try and behave like non autistic children, is hard for “non autistic children” too. There is so much focus on this, we lose time and opportunities to help autistics learn so they too, may have the opportunities in education and vocation that a life of solid educational learning can offer.
We do not ask other students to alter their ways to support the inclusion of an autistic student… we battle on with helping an autistic person to learn how to handle the other student’s behaviours that create sensory overload for autistics. I highly suspect that many people – autistic or not – suffer negatively from sensory overload, or the typical learning styles that are adopted to teach in education. Why have we not looked at how do we teach children, vs autistic children, in the ways they can learn? Why do we not tailor an educational approach for the person who is wanting to learn to the way they can learn?
So much of an autistic person’s education is based on behaviour to look or be “less autistic”, and tokenistic academic achievement. When I read my son’s IEP, I am devastated as his mum. I “see” my son in all his abilities, strengths and gifts, and it breaks my heart that in the eyes of the education system, or a teacher who is working in it, cannot “see” my son, and even if they can “see” my son, they cannot report accordingly, as they are bound
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by expectations and processes that do not foster a vocabulary or focus empowering to autistic students.
I am extremely discouraged as a parent, as I feel my son is not going to get the opportunity to be educated in the way he is capable of learning. I suspect this is partly due to inexperienced and unqualified educators when supporting neurodivergent students, but mostly, it will be about a significant lack of resources that could allow educators to tailor the educational experience the autistic person needs.
We have often created programs for autistics – like autistic schools – that only take students who seem to cope in mainstream schooling with support anyway. These are the students who benefit from tailored approaches, but also would get a decent education in the mainstream classroom with the support of an Educational Assistant, they have verbal communication and have tested as not having an intellectual disability. This seems like a great example of the tokenistic accommodation of autistic students – supporting the easier autistics that would manage – albeit with challenges – in the same system as non-autistics anyway.
There are many other autistics who will test differently because they are non-verbal, and will not respond to testing because they have significant sensory issues, or ADHD for example and then be deemed to have an intellectual disability, when they may very well not, and will not have the same opportunities throughout their education. AKA – the harder autistics! I fear this is the path for my son. He is so smart and gifted in ways, but he will not participate in standardised testing, and this, along with the systemic issues in education around students with a disability, the tokenistic attitude of society in general around inclusion and value for people with a disability having a good education and insufficient resources all round to meet the needs of students with a disability, all contribute to difficulty having a quality educational experience.
As a parent, at the start of my son’s educational experience, I am already depressed knowing he won’t have his current teacher forever, or the same Education Assistants in the future, and I have panic over what that will look like. I can recall my own educational experiences in primary school, high school and tertiary, and so much less was understood about autism in education in my experience, but I know how I felt being in school and not understanding, or being able to pay attention, or sit in a class without moving, or struggling to separate the important information that I needed to learn from the unimportant. Meeting timelines that did not work for my body, missing important information or dealing with the nuances and subtleties of implied intent that people use all the time that I missed. These things and much more affected not just my academic experience and ability to complete a degree I seemed to want at that time in my life, but more importantly, my sense of self and who I thought I was as a person from what I made the experience mean about who I was. It was extremely confusing, as I believed myself to be an intelligent person, but I struggled to learn as the system was, and I made that mean I was broken, and even
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stupid. Of course this lack of educational attainment has affected how I can utilise my gifts and passions in life, and has limited me in the very things that allow me to contribute the most value.
This is the trajectory I see for my son because of the broken education system we need to participate in.
At this point in time, I am considering home schooling as an option for my son. As an autistic woman, this is the last thing I want to do for my own coping mechanisms and mental wellbeing. However, I simply cannot handle the thought of sending my son to school each day, where people are so consumed with ticking boxes and bustling through a curriculum and goals, they fail to see a little boy communicating in a different way to most students, or a child needing support but being labelled as having behavioural issues, or being sent off into the playground each day without one on one support to play, when he has no social skills, interests, safety or risk awareness skills, is at risk of absconding or harming himself for lack of risk assessment skills in place of great ideas and significant sensory issues, or a child who is starting to feel embarrassed they still wear a nappy while other students don’t, or they are struggling with all the noise, visual stimulus or smells of a school environment, where people talk about their weaknesses and mistakes all the time, or he is a target for bullying… And after reading his recent IEP update I am not willing to put my child in an experience where he is constantly failing – whether actually failing his goals and academics his peers are achieving, or his own perceived sense of failure for being different. I know what that experience is in life, and the impact it has on one’s mental well-being for life, and the growing young person’s sense of self. I truly want my son to have a greater experience with learning, and himself as a learner, and to believe in his possibilities. I currently do not believe the education system, or most educators are capable of fostering those small and big steps necessary for him to achieve and foster his sense of self and identity .
As a result, even home-schooling done badly would be a better experience for him than trying to push him into our current schooling systems.
For many, education sets a trajectory for vocational opportunities, so education is extremely important.
iii. employment
As mentioned above, a lack of quality education impacts vocational opportunities through the impact on mental health and sense of self and the beliefs a person may have about their capacity to contribute and attain skills to do that.
As an autistic woman and mother to an autistic child, I feel strongly about safety. Autistics can be vulnerable people in our society who are often targeted for abuse or being taken advantage of. I worry about this
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particularly for my son, who will quite likely require paid care in my absence in his life.
I do believe autistics are safer in mainstream vocations, where they are seen and heard, where relationships are developed with their colleagues and peers, where people notice them each day. When people work in roles that are specialised for those with a disability, they lose that visibility in our society, and therefore safety.
Of course, with these beliefs, I want my son to have that quality educational experience that allows him to have tertiary opportunities to work in a vocation just like anyone else would.
Because there are difficulties getting an education that fosters these opportunities, his vocational opportunities are limited as well.
Autistics often need a context for what they are learning, and sometimes education and training opportunities are based in theory that can be hard to apply to the direct role one might be striving for, which makes it extremely difficult to commit to learning. Autistics may benefit from more on the job training, where what they are learning has a strong link to the job itself they can connect their learning with. Time in a classroom to learn about a vocation, which is not the actual experience of the job they want makes it hard for an autistic to attain the skills needed for their chosen vocation.
Unfortunately we still live in a society that has very tokenistic attitudes and values for people with a disability, and I cannot see society adopting accommodations for autistics that would support autistic people in roles they want and are capable of performing, and support them accordingly in “mainstream society”.
Again, future opportunities for my son cause me anxiety about his future, as it is hard to separate his education and vocational opportunities, and his life outcomes as a result.
iv. housing;
This is an area that is hugely neglected and difficult to navigate, because safety is a big issue – whether it be main roads, waterways, open spaces are all dangerous to young autistics in particular who have no ability to assess risk. Multi story homes, balconies and windows all become jump/fall risks. When looking at accommodation options, it is very difficult to find options that are safe primarily for my son, before I can even entertain affordability, or choice of comfort and preferences. You would be surprised at all the safety issues that need to be considered for many autistics at any age.
Organisation and storage from a visual perspective, is also important for most autistics to assist them with anxiety or Compulsive disorders.
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Sensory seeking autistics who use movement to meet their needs – need space to move.
Many autistics need to have swings, trampolines, therapy equipment, so space is required for them to have large items and areas that assist them with emotional regulation.
Many autistic’s bedrooms cannot have personal possessions because it prevents them from sleeping. Some autistics will not be able to use a shower for sensory issues, so therefore their home must have a bath.
A home’s acoustics can be very difficult for an autistic to live with and cause significant stress. Temperature – whether it be hot or cold needs consideration. Lighting whether it be natural or artificial will be a need to be considered for many autistics. All sensory issues need to be considered and catered for.
Location as it pertains to distance to a person’s school or work, or recreational interests can be important to avoid traffic or public transport difficulties. Sometimes location will be about noise and the impact of noise on an autistic person’s nervous system.
Many autistics will have therapy or companion animals that need to be catered for in their home.
Many autistics have dyspraxia, so can be clumsy and under stress may have difficulty moving physically or have balance issues. This means stairs or uneven surfaces through a home are risk factors to consider.
Whether one is navigating accommodation through purchasing a home, renting, or government accommodation, the list of autistics’ need in accommodation is actually significant, yet very overlooked and underestimated. There is a designer in Australia leading the way in educating builders and organisations about the needs of autistic people in their home, and I would encourage interested parties to look into her work and be advised by her. Shelley Dival from “Enabling Spaces” is guiding people all over the world in this, and sadly this is an area that has failed to be considered when planning for autistic people.
Appropriate housing needs to be made available to autistics to keep them safe, mentally well and healthy in all regards, at all ages.
These are issues that should be considered not just in the homes for autistic people, but also classrooms, public buildings, malls and stores.