Submission 123 — Name Withheld — Select Committee on Autism | External submission

To : Parliament of Australia

Re : Select Committee on Autism, Submission

Attention on productive and meaningful ways to improve services and support for autistic people in the areas of education, healthcare, employment, housing, justice and rights.

Terms of Reference

a. current approaches and barriers to consistent, timely and best practice autism diagnosis; b. the prevalence of autism in Australia; c. misdiagnosis and under representation of females in autism data, and gender bias in autism assessment and support services;

d. international best practice with regards to diagnosis, support services and education, effectiveness, cost and required intensity;

e. the demand for and adequacy of Commonwealth, state and local government services to meet the needs of autistic people at all life stages;

f. the interaction between services provided by the Commonwealth, state and local governments, including:

i. health and mental health, ii. education, iii. employment, iv. justice, and

v. housing; g. the social and economic cost of failing to provide adequate and appropriate services, including to support key life stage transitions of autistic people;

h. the adequacy and efficacy of the National Disability Insurance Scheme (NDIS) for autistic people, including: vi. autism understanding within the NDIS, vii. the utility of the Early Childhood Early Intervention Pathway for autistic children, viii. the ability of the NDIS to support autistic people with complex needs, including those transitioning from prison settings, and ix. the adequacy and appropriateness of supports to empower autistic people to participate in the NDIS planning process, and exercise self-determination through choice and control over their support services;

i. the development of a National Autism Strategy and its interaction with the next phase of the National Disability Strategy;

j. the adequacy of funding for research into autism; k. the social inclusion and participation of autistic people within the economy and community; l. the capacity and sustainability of advocacy, self-advocacy and self-determination supports for autistic people, including mechanisms to self-represent to government as enshrined in the United Nations Convention on the Rights of Persons with Disabilities;

m. any bill that relates to matters within the scope of this inquiry that is referred to this committee; and

n. any other related matters. Terms of Reference : e. f.

International best practice is required to suitably protect the rights of children with autism subject to family law proceedings, with regard to their access, custody and residency arrangements with their primary and critical care givers.

Where a critical care giver relationship is established; i.e.. A “carer” role under the Social Security Act, a child with autism requires that relationship to be further protected from interference by family courts.

Critical care relationships of children with autism need to be established as protectable relationships and legal and other mechanisms put in place to actually protect these relationships.

The “carer” role of a parent of a child with an autism condition is a significant critical relationship for a child with an autism condition. Carers are recognized under the Social Security Act where they receive ‘carer payment’ or ‘carer allowance’. The “carer” role is also established where a parent receives a ‘parenting payment single’, however ‘carer payment’ and ‘carer allowance’ recipients designates specific weekly contact and other required activity with the caree, establishing by definition, a critical-care relationship with the caree.

In the case of children with autism, ‘carers’ identified under the Social Security Act may also be completing a critical component of the child’s transition to school, such as a program of early intervention. This can be confirmed by checking Centrelink and other government records for the child’s enrolment in funding programs such as the ‘Caring for Children with Autism’ funding grants providing a pool of funds for children to access support and therapy services, specialist appointments and purchasing resources which would be managed / organized by their carer. Or the child’s enrollment in a specific early intervention program with a school on-campus center such as AEIOU.

Abrupt loss of a critical care giver can be traumatic and disturb a child with autism’s sense of well-being and security. This separation could impact their sense of self into the future and damage their capacity to trust adults or the parent they are being separated from. It is devastating to children with autism to lose critical care relationships, as such this practice should be prevented in family court cases.

My Experience

I was my only daughters ‘carer’ and sole parent, and provided her with an early intervention program to prepare her to go to mainstream school. The program was successful as she made fantastic progress during the 2-year intervention. I am a university-trained biological scientist and used my research and organizational skills to develop a suitable intervention program for her. I conducted independent research and was educated directly by attending her speech pathology sessions and observing her interactions and progress. I completed online and in person parenting and communication training courses especially for children

with autism and became specialist in my daughters’ care and communication. This training and the relationship we developed cannot be duplicated. When my daughter was taken from my care, our relationship was severely undermined and damaged permanently.

I am seeking damages from the family court in civil proceedings along with several other victim parents.

As my child’s mother and critical care giver, and “registered carer” provider of disability supports, she should never have been taken from my care for any reason. Family court took very little notice of the significance of my relationship with my daughter as her carer and undermined and ignored our family relationship and parental bond.

Family court was recklessly abusive towards me and my daughter by taking her from my care without any charge offence or danger to her from my care and moving her without any warning to her fathers house. The effect of taking her severely damaged my daughters relationship with me and my daughters attitude and outlook.

It has severely effected my personal and professional reputation, and made me homeless. And I am still homeless today.

I have not been able to get any employment in any field and I am being excluded from all family life.

This should not be the desired message to a child with autism about her critical care giver and mother. It was extremely abusive and my daughter and I should have had some protection from this in law.

With regards to Terms of Reference: f. and g.

I receive no support whatsoever to restore my parental relationship with my daughter. Every service I have approached for help, including the department of child safety, have refused to assist me in any way.

My medical condition / disability is used as the focus in the matter as a way to harass me and exclude me from my parenting life when there is no reason to do so, ie. I am being blatently discriminated against. Surely services should be in place to assist me in restoring this broken parental relationship which was damaged by family court orders between my child with autism and me, her mother. Current services are inadequate and there needs to be an adaptive case by case specific approach to assist all families in need / asking for assistance. In the absence of suitable services, I have been unable to access any advocacy or negotiation service, or any mediator or other intervention and been unable to resolve the situation since 2014 to today in July 2020. The last 6 years have been extremely traumatic for me and for my daughter who is ‘a prisoner‘ of her father currently.

There has been ongoing corruption by psychologists in the family court case and in the administrative processes in the case. I am refused legal aid and have been forced to self represent for the entire case since 2014. There continues to be unfair bias against me in the matter and I am forced to self-represent while the other party has a solicitor.

In family courts and all courts in Australia, this unbalance of representation before the court is something that the court has a capability to prevent, by orders to provide each party legal aid and ensure that both parties in a matter always have suitable and equal representation, however this has not occurred in our case and is not the norm. Provision of legal aid as a

way of course to people with a disability in family court cases, especially those including children and parents with autism conditions should be a standard practice.

I have found it was very traumatising to have to self-represent in the family court case, whether in person or by phone, as the matter is extremely unfair and I have been blatently and constantly discriminated against. I felt this has been my constant disadvantage in the matter because I suffer from post traumatic stress over the separation from my daughter and find court hearings almost impossible to participate in. Had I been provided a legal aid solicitor, I feel we would have been equally represented in law before the court and they may have been fairer to us.

Failure to ensure equal and fair representation of parties in a parenting matter before the court is a failure to extend justice. Justice for people with mental health disabilities including autism, must be to protect their human rights to having a family to enable their complete participation in society free from discrimination. Refusing equal representation puts financial bias on all court matters and unfairly disadvantages people with disabilities when they have no legal representation.

I am constantly discriminated against in the family law court case and the judge who made the orders from 2014, is being protected by subsequent judges. I have been subjected to community humiliation and conspiracy because of his court orders and actual sabotage of my appeal case since January 2019. During court hearings, in which I have to self represent, I am regularly chastised by family court judges who are misleading and who do not try to help me. Our matter should never have been allowed to continue in the family court for so long as it could have easily been resolved within 6 months, if we had been given suitable assistance. It is unacceptable mental torment of me and my daughter that we were put through a family court case without my having any legal representation.

The only acceptable reason to remove a child from the care of one of its parents is in the event of life-threatening danger such as violence, neglect, sexual abuse or mental / psychological abuse. This abuse would also routinely attract criminal charges by police; however, family courts ignore this fact and still remove children who have not been subjected to abuse and where no charges for actual offences have been made. Without a crime, children with autism should not be removed from their critical care givers for any reason. Family courts use unethical practices which are corrupt.

Established critical care relationships for children with autism are evidently suitable for them. These effective care relationships are critically important to the child’s education, development, safety and well-being. Disrupting these critical care relationships is reckless abuse which can damage children’s self -concept and effect their transition to adult-hood, ruin their relationships, ability to communicate, disrupt their education and cause children to become dysfunctional adults.

Family courts regularly disregard and ignore these critical care relationships for children in parenting disputes which is dangerous for those children who lose care from their critical care givers. Children can be “abruptly removed” from their critical care giver for no reason. There is an urgent need to protect children by ensuring their critical care relationships are not disrupted.

Child removal by family courts is child abuse, mental violence, and refusal of the human rights of the child, and in the case of children with autism, also abuse of the rights of the child as a person with a disability.

For children with autism, critical care relationships need to be acknowledged and protected in law.

There is scope to include ‘critical care relationships’ of parents of children with autism in NDIS legislation and under Child Protection Acts. There is urgent need to protect critical care relationships between children with autism and their parental care givers, from family courts.

Human Rights Conventions

Convention on the Rights of the Child

Article 2

States Parties shall respect and ensure the rights set forth in the present Convention to each child within their jurisdiction without discrimination of any kind, irrespective of the child’s or his or her parent’s or legal guardian’s race, colour, sex, language, religion, political or other opinion, national, ethnic or social origin, property, disability, birth or other status.
States Parties shall take all appropriate measures to ensure that the child is protected against all forms of discrimination or punishment on the basis of the status, activities, expressed opinions, or beliefs of the child’s parents, legal guardians, or family members.

Child removal from critical care givers by family court is punishment abuse of children with autism, children with autism require protection from this.

A child with a disability should not be routinely removed from a parent with a disability or the disability of the parent or child be used as a reason for the child being removed.

Article 3

In all actions concerning children, whether undertaken by public or private social welfare institutions, courts of law, administrative authorities or legislative bodies, the best interests of the child shall be a primary consideration.

Unless a child abuse crime has occurred, taking children with autism from their critical care giver in family court cases is never in the best interest of the child.

States Parties undertake to ensure the child such protection and care as is necessary for his or her well-being, taking into account the rights and duties of his or her parents, legal guardians, or other individuals legally responsible for him or her, and, to this end, shall take all appropriate legislative and administrative measures.

Family courts should not refuse parents of children with autism their legal caring responsibilities when they remove children.

Article 9

States Parties shall ensure that a child shall not be separated from his or her parents against their will, except when competent authorities subject to judicial review determine, in accordance with applicable law and procedures, that such separation is necessary for the best interests of the child. Such determination may be necessary in a particular case such as one involving abuse or neglect of the child by the parents, or one where the parents are living separately and a decision must be made as to the child’s place of residence.

Children with autism require protection from the family courts who routinely remove children from their parents for no reason.

Article 19

States Parties shall take all appropriate legislative, administrative, social and educational measures to protect the child from all forms of physical or mental violence, injury or abuse, neglect or negligent treatment, maltreatment or exploitation, including sexual abuse, while in the care of parent(s), legal guardian(s) or any other person who has the care of the child.

Children with autism require protection from family courts to prevent their removal from their critical care givers, and loss of contact with critical carers s this is a form of mental violence against them and their paretnt.

Convention on the Rights of People with Disability

Article 5 - Equality and non-discrimination

States Parties recognize that all persons are equal before and under the law and are entitled without any discrimination to the equal protection and equal benefit of the law.
States Parties shall prohibit all discrimination on the basis of disability and guarantee to persons with disabilities equal and effective legal protection against discrimination on all grounds.

Parents of children with autism are subjected to discrimination in the family courts if they have a disability. Children are taken from these parents for no reason. I have experienced this myself.

In order to promote equality and eliminate discrimination, States Parties shall take all appropriate steps to ensure that reasonable accommodation is provided.

Parents with a disability need to be identified as a significantly disadvantaged parenting group in family courts and given legal assistance such as legal aid as a matter of course. The court has a legal duty to provide fair proceedings and ensure all parties in a case are equally represented.

Article 16 - Freedom from exploitation, violence and abuse

States Parties shall take all appropriate legislative, administrative, social, educational and other measures to protect persons with disabilities, both within and outside the home, from all forms of exploitation, violence and abuse, including their gender-based aspects.

Exploitation abuse includes the taking of children from parents with a disability in family courts.

States Parties shall also take all appropriate measures to prevent all forms of exploitation, violence and abuse by ensuring, inter alia, appropriate forms of gender- and age-sensitive assistance and support for persons with disabilities and their families and caregivers, including through the provision of information and education on how to avoid, recognize and report instances of exploitation, violence and abuse. States Parties shall ensure that protection services are age-, gender- and disability sensitive.

Legal and other measures need to be in place to prevent children with autism losing all care or contact with their critical care givers.

In order to prevent the occurrence of all forms of exploitation, violence and abuse, States Parties shall ensure that all facilities and programmes designed to serve persons with disabilities are effectively monitored by independent authorities.
States Parties shall take all appropriate measures to promote the physical, cognitive and psychological recovery, rehabilitation and social reintegration of persons with disabilities who become victims of any form of exploitation, violence or abuse, including through the provision of protection services. Such recovery and reintegration shall take place in an environment that fosters the health, welfare, self -respect, dignity and autonomy of the person and takes into account gender- and age-specific needs.
States Parties shall put in place effective legislation and policies, including women- and child-focused legislation and policies, to ensure that instances of exploitation, violence and abuse against persons with disabilities are identified, investigated and, where appropriate, prosecuted.

As part of reviews of the family law system, incidents of exploitation of children with autism and their parents, should be fully investigated and prosecuted. My family law court case is a classic example of abuse by a family court judge who chose to discriminate and exploit me by removing my child with an autism condition for no reason.

Article 23 - Respect for home and the family

States Parties shall take effective and appropriate measures to eliminate discrimination against persons with disabilities in all matters relating to marriage, family, parenthood and relationships, on an equal basis with others, so as to ensure that:

(a) The right of all persons with disabilities who are of marriageable age to marry and to found a family on the basis of free and full consent of the intending spouses is recognized;

There are currently no known programs for persons with disabilities to assist with parenthood, relationships or founding a family as such. The protection and education of persons with disabilities in terms of this knowledge is lacking in the extreme in this country. People with disabilities are frequently subjected to abuse and exploitation in relationships due to lack of appropriate mentoring and guidance from the community. Persons with disabilities are subjected to sexual abuse, sexual trafficking, and forced prostitution. Relationships etiquette is not currently taught in schools. There are few protections in place for people with disabilities.

States Parties shall ensure the rights and responsibilities of persons with disabilities, with regard to guardianship, wardship, trusteeship, adoption of children or similar institutions, where these concepts exist in national legislation; in all cases the best interests of the child shall be paramount. States Parties shall render appropriate assistance to persons with disabilities in the performance of their child-rearing responsibilities.
States Parties shall ensure that children with disabilities have equal rights with respect to family life. With a view to realizing these rights, and to prevent concealment, abandonment, neglect and segregation of children with disabilities, States Parties shall undertake to provide early and comprehensive information, services and support to children with disabilities and their families.
States Parties shall ensure that a child shall not be separated from his or her parents against their will, except when competent authorities subject to judicial review determine, in accordance with applicable law and procedures, that such separation is necessary for the best interests of the child. In no case shall a child be separated from parents on the basis of a disability of either the child or one or both of the parents.

Family courts do not adhere to this, children are taken from parents with a disability and never returned in corrupt court proceedings.

Early Intervention from autism

My daughter was found to have developmental delays when she was 2yo at a routine child health examination. This was later diagnosed as being aspergers autism by a paediatrician.

Her autism condition made her almost unmanageable as a young child causing her significant communication problems.

I was able to access information from the Department of Health website about how to most effectively address her problem behaviour and how to best provide early intervention, aimed at reducing problem behaviour so that children can attend mainstream school.

The program of care which was most highly recommended for children before starting primary school was 20hrs per week structure for 2 years, which I provided and was successful.

As a single mother on the centrelink payments; parenting payment single, family assistance A & B payments, plus a grant from the helping children with autism package, we had more than enough funds to pay all expenses including rent, electricity, food, clothing, education materials, furniture, nanny services and specialist appointments for the duration of the early intervention program.

I followed the guidelines of the program listed on the website and designed a weekly schedule which we adhered to for 2 years successfully. It was my opinion that any single parent family or other family could provide an early intervention for their children with autism, easily, however I was privileged that I only had my daughter and myself to attend to. Families with more than 2 people might find providing an early intervention program difficult, but not impossible, given the current resources that are available and welfare supports already in place.

I was defamed in the family court case and lied about by the ICL, when she said I did not provide my daughter with a sufficient educational environment and that she felt ‘I had nothing to offer my daughter’.

There was not much I could do to withstand the lies said about me in the court case and the Judge even ignored my evidence of how I read over 250 books with my daughter since joining the local library.

Unfortunately, my daughters primary school also lied about me and accused that I had no intention of putting my daughter into a school. The primary school delayed my daughters academic progress as she was left permanently in their special needs program. My daughter complained to me that school was very boring and they refused to account for her giftedness in some areas. The school said on her enrolment, she was unable to count to 100, read basic words, or know her ABCs, which was a lie as she was also able to operate computers when she began primary school.

During my daughters attendance at playgroups and a kindergarten, she was not fully included due to her autism making her socially awkward, in my opinion based on my observations of the activities and her participation. Parents were discouraged from attending at the kindergarten with their children even though my daughter badly needed an in-class support person.

We finally arranged for an in-class support person for my daughter at the kindergarten, however they were not exclusively supporting my daughter and were used as a teachers aide for the entire class, and paid for by her funding grant.

She attended one term at the special needs kindergarten provided by a primary school before attending primary, where she was part of a class of all boys with various disabilities which I felt was not suitable for her.

I felt that I would have benefited from having a support person to assist me to manage and arrange her early intervention program, however I was only able to access the Carers organisation in my local region, but got advice from her paediatrician and had ample access to online supports and nanny services as needed.

There was a playgroup we trialled especially for children with autism, but unfortunately that playgroup did not continue after it was not patroned by any other families in the region for having higher than usual participation fee.

We accessed the local toy library constantly which was an excellent toy supplement allowing my daughter to access constantly interesting activities and different toys, which is what I found is recommended for children with autism.

It was very helpful for me, as my daughters carer and mother, to sit in with my daughter during her speech pathology sessions and observe methods of interacting with her that were successful, including using visual task lists and ways to provide suitable structured activities.

I read several books about child development and managing childrens behaviour as well as completing in person and online courses and training while my daughter was in my care. It is my opinion that I benefited from studying all of this since basic parenting skills training would not have been sufficient information about how to manage difficult child behaviour. The triple p parenting training course and the stepping stones parenting course were both very useful.

My daughter tried several extra curricular activities including ballet and swimming school but we found she was not able to cope with these activities and as we did not have a second support person with us, we had to cease going. We did complete a term of music/dance playgroup which was a small group of 8 children with their mother in a small room, and had excursions with our nanny.

I found that my daughter benefited from taking a childrens multivitamin which helped her with fussy eating by increasing her appetite and improved her overall mood and concentration.

My daughter benefited from having other children over to play with at our house often, and being able to go to playgrounds and meet other children frequently as well as having nannies to babysit her who completed art activities with her and specialised in care of children with autism.

On one occasion, we had an unsuitable nanny who could not cope with my daughter and called me to return immediately. All other times, we had a nanny, who was our regular nanny who also had experience caring for children with autism.

I wrote a book about our early intervention program and the activities we completed which outlines how I provided her program and a lot of the care tips that I discovered worked for her. I did not describe much of the exact trajectory of her progress in different areas but gave a summary of what worked and what did not work for the benefit of other parents. I have since put a lot of the material onto the internet and make the book readily available for other parents but have not commercially published it as yet.

Unfortunately I have not been accepted to work as an autism advisor for groups such as Autism QLD, but I do offer an advisory service to other parents and have my book available to purchase and print copies as requested.

I have several facebook pages, some of which offer ideas about early intervention which are freely available to anyone.

I feel there is a need to provide autism specific playgroups and childcare services, as well as early intervention programs similar to that provided by AEIOU. I believe the early intervention program I provided my daughter was similar or equivalent to that provided at AEIOU and that any parent could potentially provide their children early intervention at home if needed.

Other Suggestions

Social Isolation as a policy shaper

Children with autism tend to be more socially isolated and tend to isolate as a preference. This can be due to social anxiety or other fears and worries, and is typical of people with autism.

The problem is that it can prevent full participation in society such as communicating, which can be potentially, fatal.

Actual social needs at any time, should be assessed by support services, and individuals in conjunction with service providers and parents so that long term plans can be created for the prevention of social isolation to reduce unemployment and unhappiness.

Preventing social isolation can prevent many subsequent deadly mental health problems, therefore it should be a continuous goal in autism care across the life span to ensure optimum participation in society and increased well being.

Housing services which address the life issues of people with Autism

There is going to be / there is, an increasing need to assist people with autism disability to find suitable shared housing to prevent their homelessness which also prevents their long term social isolation.

People with autism frequently lack sustainable employment and a capacity to house themselves, and are then forced into housing with their family members.

Being socially excluded and / or isolated means that people with autism may also suffer housing problems all through their life and require services to assist them to have suitable housing.

Housing which does not increase their social isolation and exclusion, and is protective would be ideal such as housing commission flats or housing commission-managed shared rental housing leases providing people with disability rental leases on rooms in shared houses.

Services need to be created that a homeless person with a disability can be referred to, when they contact homeless crisis housing services for support. Homeless triage should ideally be able to discuss every persons housing needs when they make their first contact. Currently homeless housing crisis triage services are finite offering support for homeless housing crisis only. Ideally they could offer referrals to other housing services to prevent homeless people feeling at a dead end if they do not meet criteria for a space in crisis housing facilities.

Reducing stigma in service delivery

As a person with a mental health / trauma related disability, I would like to see a disability free focus in services to prevent stigma and discrimination.

Housing

For example, rather than being identified as a person with a mental health disability who is homeless and being pushed towards services for mental health care management, I would like to be pushed towards services for assisting disadvantaged people to find housing.

A mental health disability such as autism, and a traumatic situation such as homelessness, is a heightened communication challenge. Supporting people with disability to communicate and access information about suitable housing would be the best way to provide them with support.

Life Coaching as well as Counselling

It would be useful to readily provide Life Coaching services to people with complex problems in addition to / rather than, counselling and therapy.

Life Coaches can help to empower people to manage their life problems more effectively themselves giving them encouragement rather than focussing on their disability which is disempowering / discouragement.

All people require skill in managing life problems, regardless of the influence of their disability, therefore I would encourage the use of Life Coaches and mentors for people with disability and autism across the life span.

I would encourage the use of Life Coaches for people with complex problems rather than Case Managers and Social Workers because Life Coaches do not focus on the disability and problems of a person.

Expanding School Curriculum

Children with autism need to be given opportunities to have their care needs assessed at different times during their schooling covering more than just their academic curriculum meeting education needs.

To identify their needs for mentoring, education and assistance in establishing and maintaining healthy lifestyle and living patterns;

x knowing how to care for themselves to access a daily healthy diet, x knowing how to care for themselves to maintain healthy exercise activities, x knowing how to get help with their close relationships and friendships, x knowing how to assess their own needs & communicate those needs.

x getting help with their career and life plans and maintaining those plans with help from life coaches, mentors and groups.

Putting these life issues into school programs / jurisdiction would help.

Assistance Animals as a policy focus

The use of assistance animals to help people reduce anxiety and social isolation could be an increasing policy focus for people with autism across the lifespan. It would be great if assistance animals were much more affordable and easily accessible to people with autism, trauma and mental health disability.

Providing subsequent concessions to persons who require an assistance animal would be required, such as enabling assistance animals a right to travel on public transport, attend with a person in shopping centres and attend public events and be named on rental tennancy agreements.

Assistance animals are currently unaffordable to people on a low income, therefore use of a government scheme is needed.