Advocating For Autistic Parents IT S A HUMAN RIGHTS ISSUE.

Transcription

1 Advocating For Autistic Parents IT S A HUMAN RIGHTS ISSUE.

2 A Human Rights Advocate Human Rights Advocate for autistic women and girls working through Autism Women Matter Autism Asperger Advocacy Australia (A4) Task Force on Leadership & Mentoring of Children and Young Women with Disabilities with the Global Partnership on Children with Disabilities (GPcwd). Spoken at, and engaged with international bodies including: World Human Rights Forum United Nations

3 A hidden Disability Group The feminine expression of autism does not get recognised because; Girls can develop coping, masking and social echolia as strategies to combat their unmet disabilities needs. Research is under developed with few studies including females. There are few consistent studies on gender differences in the presentation of autistic people. Diagnostic screening instruments and clinicians bias can view autism through a male phenotype. This feminine expression of autism is not restricted to females. It may be present in males who can experience similar issues in having their autistic needs recognised.

4 A hidden Disability Group 2013 Autism Women Matter survey on the needs of British autistic women 61.62% of women surveyed had been formally diagnosed as being autistic 38.8% of women self-identified as being autistic Of those women, a measure of the effectiveness of the diagnostic pathway can be obtained through the funding support for a diagnosis. 28.7% self-funding their diagnoses 63.49% obtaining a diagnosis through the NHS 7.97% diagnostic funding support through a charity

5 A hidden Disability Group There are gaps between what WE know about us and what professionals UNDERSTAND about us. The failure to identify, assess and service provision autistic women is a form of discrimination. It is impairing and nullifying their recognition as autistic women. It can prevent their enjoyment and exercise of a full and rewarding life on equal basis with their male counterparts. Picture Credit:

6 Autistic Family Life, Systemic Failures Autistic family life, where parent and child share nuerology, is a natural component to society. There are many fantastic mothers whose personal experience becomes a formidable source of protection and diligence to care for their child and protect them from similar misfortune. Women with autism who had a child with autism spoke of a special bond with that child and of having the intuition to know what their child needed even when it was different to what all the books and advice stated. Sarah Hendrickx The failures to identify women as being autistic and the challenges in obtaining a diagnosis impact on their experience with the judicial system and social services. 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.

7 Forced Adoption The United Kingdom remains one of the few European Union countries to practice forced adoption, 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. Children of autistic parents can be 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). Children have the right to be protected from all forms of abuse, neglect and violence. This includes systemic abuse through unmet disability needs of parent and child.

8 Human Rights Violations, Autistic Mothers The difficulties of autistic parents were collated in a report to The Office of the United Nations High Commissioner for Human Rights. Five groups that support autistic people in the UK made contributions. The report was later represented at the review of the United Kingdom at Palais Wilson, the international home of human rights. %20Documents/GBR/INT_CCPR_CSS_GBR_20656_E.pdf

9 Research Briefing CEDAW, United Nations The Autism Research Centre at Cambridge University, in collaboration with autistic women, have researched the experience of autism and motherhood. Pioneering world first research. Private briefing with the committee of the Convention for the Elimination of Discrimination Against Women (CEDAW) at the United Nations. Cambridge University researcher, Alexa Pohl presented the preliminary results alongside presentations by myself, Dr Catriona Stewart from Scottish Autism Women Network and Magali Pignard from Alliance Autiste from France.

10 When A Mother Is Being Misunderstood You may interpret her communication as obstructive when she has a social communication disability You may think she is aggressive and shouting but she is struggles to moderate the tone of her voice and may lack some self awareness You may think she is not engaged with you and not seeming to take an interest in what is happening when she is in fight, flight, frozen protective mode You may think she is fabricating illness or overly focusing when she is researching and being questioning You may think she is overly controlling when she is seeking certainty You may think she will not accept help offered when she does not know the processes You may think she has not formed a strong maternal attachment to her child when she is responding appropriately to their autistic needs

11 Contact Session Reasonable Adjustments Keep to scheduled times Consider impact of the room to Sensory Processing disorder to DECREASE coping and INCREASE quality parent / child interacton Provide toys and / or equipment for the child that engages their interest Social stories and visual supports for the child in care Understand the heightened anxiety of an autistic parent in feeling 'exposed' through being watched and assessed in sessions Reduce background noise, including social workers talking Failure for social workers to correctly 'read' facial expressions, body language and tone of voice of autistic parents leading to misinterpretation and miscommunication

12 What You Can Do DO become aware of how women may present differently to men DO give her any paperwork at least 3 days before any meeting DO make sure meeting rooms are comfortable and are sensory friendly DO give her a flowchart of the system and show her what stage she is in DO make your communication clear, concise and without hidden meanings DO tell her who will be working with her, their role, their limitations and what they can do to help her DO allow her a trusted friend or advocate to be with her DO fund social groups, led by autistic women, for social bonding and shared experiences

13 Final Comment ''I spent my childhood unsupported, unprotected and misunderstood. The social care system, schooling system and medical system all failed to recognize my autism or protect me from abuse both in and outside of the home. If I had a child they would likely be on the spectrum. I am unlikely to ever be in a financial position where homeschooling is an option but I do not trust that state run schools can meet the needs of a child on the spectrum or protect them from bullying or emotional harm. I believe there are many misconceptions about the abilities of Autistic people to parent. I suffer from PTSD and other mental health conditions as a result of my childhood. As a disabled person, if I do reach out for help with parenting, these diagnoses may be used against me. I may lose my children and my children may lose their parent. This is not a risk I am willing to take. I am extremely maternal and would love to have children but know rationally that, particularly as a working class woman without familial support, The environment I would be forced to subject my children to and the risks involved in giving them this life means it is neither safe, kind nor worth it. ''