Written submission from Autism Women Matter (SDG0040)

 

In response to the invitation by the Women and Equalities Committee's inquiry on the implementation of Sustainable Development Goal 5 in the UK, I welcome the opportunity to contribute on the unmet needs of women and girls that are autistic, have an autism spectrum condition.

 

My advocacy has focused on policymaking and research on autistic women and girls with current affiliations including; Founder of Autism Women Matter, UK based NGO. Management Team, Autism Asperger Advocacy Australia, Australia’s peak body for autism. Advisor, Yellow Ladybugs, an NGO focused on the needs of autistic girls. Expert Panellist and Co Author of the collaborative research project between Autism Women Matter, Cambridge University and Autism Research Centre on ‘autism and motherhood’. Through my work with Autism Women Matter I have been invited to events and international bodies including UNESCO in France, CEDAW in Switzerland in a private thematic briefing, United Nations in Switzerland, World Human Rights Forum and the ‘women with disabilities and human rights’ forum at the International Book Conference in Morocco and the EU Commission in Belgium. Affiliated advocates to Autism Women Matter have attended the United Nations in United States of America and World Health Organisation in Switzerland. 

 

Autism is a neurological difference that is both genetic and hereditary. It is our culture, our identity and our also our disability. Previously, autism was thought to be more common in males than females. It is now known that the rates of autistic females, a ‘hidden’ disability group, is much higher and though the current gender ratio is 4:1 male to female strong anecdotal evidence indicates it could be equal. For autistic women, before obtaining the correct diagnosis of autism they be mislabelled with anxiety, depression and personality disorders through poor understanding of their needs as disabled people. It must be considered, that males can fit the feminine expression of autism and are also being missed or misdiagnosed.

 

This document will focus on the effect of poor policymaking, missed and mis diagnosis, stigma and discrimination and the systemic failures autistic women and girls experience in the UK, most who are only just being identified due to misogynist diagnostic tools or may not be aware of their own autism through inadequate social and professional awareness.

 

Section One: Autistic Women

Through Autism Women Matter I lobbied the Department of Health and their Autism Leads, including from ADASS (Association of Directors Adult Social Services) and submitted the response of 100 autistic women residing in the UK titled ‘Autism Strategy Review Contribution (100 Asperger Women Contributions)’ Within the United Kingdom, 62% of surveyed women were diagnosed, 33% self-identified as being autistic and 5% believed they had been missed or misdiagnosed. 37% of women had self-funded or received help from a charity to fund their diagnosis and 75% of women identified themselves as being heterosexual. 45% of women are unknown to social services by not meeting criteria for support or believing they only help certain individuals, 17% do not engage with social services through fear/anxiety of how they will be judged as an autistic person, 15% receive support from Social Services and feel under-supported and that their parenting is judged,15% believe Social Services are helpful but lack resources and 7% believe Social Services are very helpful, understand their needs and provide appropriate support.

 

Inadequate Policymaking and Policy Implementation Within the UK

The ‘Adult Autism Strategy: statutory guidance’ was published on 26th March 2015 and it does mention women and their roles as parents. Advocacy surrounding autistic women and girls is in infancy and requires development with funded collaboration between autistic women and the professionals, charities and parent carers that support them, but may see autism through their own needs. It must be noted, the benefit of user led groups to autistic people has been recognized in England’s statutory guidance for autistic adults and yet, no user led autistic group in England received funding. Indeed, my own advocacy experience in England is that I am usually the only person in the room not receiving funding or a salary and whilst salaried staff can ‘clock off’ from autism, it is my lived experience 24 hours a day 7 days a week.  On female diagnosis, a direct reference in the ‘Adult Autism Strategy: statutory guidance’ as a ‘should do’ states:

 

“Local Authority, NHS bodies and NHS Foundation Trusts should:

Recognize that women with autism may be missed and misdiagnosed as they may be better able to mask their social difficulties. There can also be a perception that autism is something that men have and this can impact on women being referred for diagnosis. Improved awareness and training should help overcome this”

 

On autistic parents and their difficulties with social services child protection that can escalate into care proceedings and forced adoption there is an indirect reference:

 

  1. Preventative support and safeguarding in line with the Care Act 2014 from April 2015

Furthermore, changes such as bereavement, moving home, getting married or divorced, having children or becoming unemployed can have a particularly significant effect on someone with autism. Everyday life may also create stresses that affect someone with autism, for example relationships in the workplace. Preventative support can help people with autism to manage such events and day-to-day life better.

 

Autistic People Love and Become Parents Too, and Encounter Stigma and Discrimination

A key finding of the ‘autism and motherhood’ research, a collaborative research project between Autism Women Matter and Cambridge University, revealed

“1 in 5 mothers of a child with autism, regardless of maternal diagnosis, were assessed by social services; of those, 1 in 6 had their child compulsorily placed for adoption. Finally, rates of allegations and investigations of suspected fabricated illness amongst children with autism and their siblings were two orders of magnitude higher than the known incidence the UK”.

 

Some of these families have endured years of professional neglect and abuse, based on misunderstanding and inadequate assessment. Different or unusual styles of family life are seldom respected. Due consideration is rarely given to providing services to support the capabilities of parents with disabilities or neurological difficulties. Disabled parents and their children have a right to family life. Autism should never be accepted as the overriding reason to remove children from their birth families. The Cambridge research, ‘autism and motherhood’ concluding statements:

 

“Mothers with autism would benefit from far more and better tailored support. Allegations of fabricated illness, and high rates of surveillance by social services suggest there may be discrimination towards mothers with autism.  The stigma associated with autism may be a barrier to accessing services. Further research should consider the mental health implications of being a mother with autism. There is a clear need for more and better autism awareness within the UK.”

 

Figure 1Poster Presentation by Researcher, Alexa Pohl, from Cambridge University from IMFAR 2016 in Maryland USA

 

The failures to identify women as being autistic and the challenges in obtaining a diagnosis are still present. Through these failures, women that are autistic but have not been diagnosed, or are unaware of their autism, have entered child protection proceedings without the reasonable adjustments (accommodations) they would otherwise be entitled to under the Equality ACT 2010 (http://www.legislation.gov.uk/ukpga/2010/15/contents). Autistic mothers are going into court as vulnerable witnesses, unrepresented and without advocacy where the child protection system, without reasonable adjustments, are causing the very harm to children that they claim to be preventing.

 

Children have the right to be protected from all forms of abuse, neglect and violence and children are also violated by unwarranted removal from their families without their consent. The United Kingdom remains one of the few European Union countries to practice ‘forced adoption’, the practice of removing children permanently from their parents and the subsequent adoption of those children, following intervention by the Local Authority without the consent of the parents. Further, children are removed from their families as a predictor of ‘future emotional harm’ where no current or past abuse, neglect or violence has occurred and frequently alongside allegations of Munchausen by Proxy (Fabricated Illness).

 

In 2000 the Former Prime Minister Tony Blair’s ‘white paper’ ordering a 50 per cent increase in the number of young children placed for adoption from care and provided £20million to councils as incentive bonuses (http://dera.ioe.ac.uk/2241/1/dh_4080512.pdf) to meet targets.

 

Autistic people are more likely to be harmed than harm others and have a strict adherence to rules. Their homes can be their ‘safe place’ free of demands from society and where they retreat to deescalate from their experiences with the outside world. Autistic children and adults can struggle with unexpected visitors where they have not been able to manage change effectively into their daily routines that are important for their sense of security and stability.

 

Under Section 46 of the Children Act 1989, In the United Kingdom police have child protection powers to intervene to safeguard children from “significant harm”.  Under this law, the police have the power to remove children to a safe location for up to 72 hours and do not require a court order to remove children.  A 1998 study of 13 police authorities found that the most common reason for police protection provisions being used was for children “at risk” with 60% of children being placed into Local Authority care (Protecting Powers: Emergency Intervention for Children’s Protection. West Sussex, England: John Wiley & Sons. pp. 55–82).

 

Some local authorities choose to seek assistance from the police when courts are unwilling to hear an application for an Emergency Protection order at short notice (The Social Worker’s Guide to Children and Families Law.) Some police officers feel that they do not have adequate training or skills to make a judgement regarding exercise of their child-protection powers (The Social Worker’s Guide to Children and Families Law.). A larger concern of the police is regarding the consequences of not acting; therefore, ‘covering their backs’. (Protecting Powers: Emergency Intervention for Children’s Protection. West Sussex, England: John Wiley & Sons. pp. 55–82).

 

For an autistic mother, uniformed police officers arriving at her home unannounced when she is managing her child’s needs can escalate the family emotionally and trigger an autistic overwhelm that is referred to as a ‘meltdown’. She may be unaware of the seriousness of the visit, what it entails and what actions could be taken and find it difficult to manage her emotional responses at the unannounced intrusion on family life. Her response, and the response of the child, may create the impression of ‘significant harm’ needed for police to act and / or the police preferring to take preventative action as self-protective measures.

 

Police officers must receive training on autistic families so that they are confident in making balanced decisions before exercising their protective powers. The failure to have the training, and decisions being made to self-protect rather than protect the child, is breaching the family right to a private family life. These situations become ‘evidence creating’ of perceived harm where the Social Services may not can meet the legal threshold criteria to obtain court orders to remove children.

 

Current Human Rights Violations of Autistic Women and Families Within The UK

Autistic families are being systemically failed and abused through not having their status as disabled people recognised and appropriate service provisioning in violation of Article 2, 1 “Each State Party to the present Covenant undertakes to respect and to ensure to all individuals within its territory and subject to its jurisdiction the rights recognized in the present Covenant, without distinction of any kind, such as race, colour, sex, language, religion, political or other opinion, national or social origin, property, birth or other status”.

 

The long-term discrimination and failures by officials, and the difficulties in accessing complaint processes, constitute a violation of Article 2 section 3A “To ensure that any person whose rights or freedoms as herein recognized are violated shall have an effective remedy, notwithstanding that the violation has been committed by persons acting in an official capacity”.

 

Autistic families are being violated in their family and home through unwarranted interference in violation of their Article 17 section 1 rights “No one shall be subjected to arbitrary or unlawful interference with his privacy, family, home or correspondence, nor to unlawful attacks on his honour and reputation” and by not being able to access advocate support who are trained in autism, their Article 17 section 2 rights are being violated “Everyone has the right to the protection of the law against such interference or attacks”.

 

The judicial system can be compliant in systemic abuse through failing to adequately safeguard women in fair proceedings through not providing reasonable adjustments in child protection proceedings to the detriment of the family unit. This is in violation of Article 26 “All persons are equal before the law and are entitled without any discrimination to the equal protection of the law. In this respect, the law shall prohibit any discrimination and guarantee to all persons equal and effective protection against discrimination on any ground such as race, colour, sex, language, religion, political or other opinion, national or social origin, property, birth or other status”. This is particularly relevant to families where forced adoption has occurred and subsequently the judicial system was found at fault but refuse to set aside adoption orders in misguided handling of their interpretation of the rights of the child to family life. The police powers of removing children, where a court order does not exist, based on judgement without adequate understanding and training of autistic people and their differences in communication and response to unplanned visits must be considered a breach of Article 26.

 

Autistic family life is a natural component of society where their rights in Article 23 “The family is the natural and fundamental group unit of society and is entitled to protection by society and the State” must be respected with appropriate and adequate supports, where necessary, as reasonable adjustments to protect the child’s Article 24 rights “Every child shall have, without any discrimination as to race, colour, sex, language, religion, national or social origin, property or birth, the right to such measures of protection as are required by his status as a minor, on the part of his family, society and the State”.

 

No woman should need to consider system failure and rights violations as part of her future reproductive choices.

 

Section Two: Autistic Girls In the UK

 

In compiling this section, I include the results of UK autistic girls aged under 18 and their parent carers. This data has been extracted from a global survey of 1,474 autistic girls from Australia, USA, European Union, Canada, New Zealand and the Ukraine. The survey, titled ‘The Experience of Autistic Girls, Girls Diagnosed with An Autism Spectrum Condition’ I co-authored with Katie Koulas, Founder of Yellow Ladybugs, an Australian NGO recently expanded to the UK and USA who are renown for creating positive and inclusive experiences for autistic girls and women and seek every opportunity to advocate for their rights.

 

Discrimination and Inequality in Healthcare

Studies have shown that parents of autistic children notice a developmental problem before their child's first birthday yet in the UK, 24% (global rate 47%) of girls are diagnosed within one year of their parent first raising concerns with their GP or pediatrician. 36% of girls wait between one and two years, 27% wait 2-5 years and 13% wait more than 5 years.

 

Research has shown that a diagnosis of autism at age 2 can be reliable, valid, and stable with the medium age of diagnosis of Autism Spectrum Condition being 3 years and 4 months and Asperger Syndrome of 6 years and 2 months (reference http://www.cdc.gov/ncbddd/autism/data.html).  6% of autistic girls receive a diagnosis before the age of 3, 18% (global rate 34%) aged 3-5yrs, 18% aged 6-8yrs, 21% aged 9-12yrs, 14% aged 13-18 yrs. with 23% (global rate 11%) still waiting to have their disability recognized. Factors impacting on more timely diagnosis for autistic girls include:

 

56% of girls are diagnosed correctly with one assessment. Lack of professional training has 16% of girls requiring a second assessment, 9% of girls had more than two assessments and 19% (global rate 9%) of girls are still waiting to be diagnosed. Late or no diagnosis impacts on girl’s ability to access early intervention programs. Shockingly, only 29% (global rate 51%) of girls had no access to early intervention.

 

Layered Vulnerabilities and Economic Disadvantage

Consideration of the degree of vulnerability experienced by autistic girls, by systemic and community failures to meet their autistic needs, on the family unit. 83% of Autistic children are growing up in two adult households where 31% of parents share the same neurology as their child, diagnosed or self-identifying as autistic. 49% (global 37%) of children are growing up with parents that report their own mental health to be fair to poor with physical health a difficulty for 37% of parents. As girls struggle in education, health systems and a sense of social belonging, at home they are prone to economic disadvantage. 59% (global rate 50%)of parents are not in full or part time employment with systemic failures proving a barrier. Factors in unemployment;

 

Economic disadvantage can be a barrier to girls accessing fee paying healthcare, reduces their ability to be diagnosed and receive appropriate levels of mental health support to manage co-occurring conditions including social anxiety, depression and eating disorders. Financial ramifications on the family unit are discussed in section ‘discrimination and inequality in healthcare’.

 

Autism Accessible Communities and Services

45% of autistic girls and their parent carers have been unable to access their communities in the past month. Factors of community participation;

 

Medical professionals should ensure their offices have had an autism friendly sensory audit to be accessible for autistic patients. There is a need for medical professionals to be trained on how to engage with an autistic girl in her communication style and help her interpret her feelings of being unwell. 6% of girls are nonverbal, 1% use assistive communication devices, 22% of girls have their parents communicate their health needs, 28% of girl’s experience mutism in doctors’ offices from being overwhelmed and 43% of girls can communicate their needs to health professionals.

 

 

Education: Curriculum not modified

74% (global rate44%) of parents believe that the current teaching styles did not match their daughter's learning style. This is compounded by 63% of girls experiencing shutdown and meltdowns on their return from school most days or at least weekly.  53% of parents feeling that their concerns were not listened to by the school. 

 

Autistic Girls Sense of Belonging, Friendship and Bullying

21% of girls have no sense of belonging at school, 55% have a bit/some, 17% (global rate21%) have a lot and 7% (global rate 76%) have a tremendous sense of belonging. When looking at the sense of belonging we must consider the rates of bullying and friendships autistic girls experience at school. 39% of autistic girls have no friends at school and a staggering 68% of autistic girls have experienced bullying. The Yellow Ladybugs survey asked this as a multiple answer question. 52% of girls have been verbally abused, 24% have been physically abused, 11% have had their property damaged and 34% have been socially excluded.

Girls must be able to identify when abuse is occurring, how to report the abuse and can escalate their concerns. 30% of parents are unsure if their child can report a problem, 15% of girls cannot, 43% of girls can tell a teacher and only 12% of girls know how to escalate their report of abuse if it is not listened to, actioned.

 

Current UK Failures Relating to Autistic Girls

Autistic girls are encountering discrimination, poverty, mental health distress, education failures and social exclusion against professional’s lack of training to identify them in a timely manner. Their failures impact on girls by not accessing early intervention support alongside their autistic male peers. 

 

A normalisation agenda for autistic girls is harmful, supports must be meaningful to the child and allow her space to follow her own trajectory. Autism is not to be eliminated or hidden, autism is what our girls will grow into as they age. The onus is on homes, schools, professionals and the community to allow her to grow into a confident woman, self-assured in her own identity, as an autistic female, without internalised self-oppression. Therapy sessions should not replace her right to be a child, and engage in her interests, indeed, those interests when nurtured may become her employment expertise.

 

Autistic girls must be given their voices to grow into empowered women who can self-advocate in their own health, report when a victim and have the capabilities to advocate within systems for their needs to be recognised. For far too many girls, this is not their current reality.

 

Autistic girls are having the stability of their home life compromised with higher levels of unemployment, higher levels of parents physical and mental difficulties and high levels of debt accumulated through parents fighting against systemic misunderstanding and poor provisioning for their children.

 

Comparing the experience off UK girls against their global peers, British girls are disadvantaged in far higher proportions in many areas. Of the most concern, 7% of British girls feel a tremendous sense of belonging against 76% of autistic girls worldwide. Other areas of concerns include:

 

 

Concluding Remarks

It is imperative that the current gender bias is addressed so that autistic women and girls can fulfil their full potential. This must be done in full consultation with autistic women. Further, the human rights violations against autistic women as mothers must be investigated and stopped. To not do so, will have the UK government held accountable for stolen generations of children where the same process used to discriminate against single mothers in previous generations, now being apologised for, is being re-enacted.

 

December 2016

8