The case for a statutory regulator for autism interventions
With panorama exposés and scandals confidence into disrepute of intervention services autistic people are referred to or lack access to aren’t simply up to scratch. This is something Rachel Winder has noticed and wants to do something about it with launching a petition on the British parliament website with a steep challenge ahead as with six months of the petition being active online she would need to get ten thousand signatures to the online petition for it to be considered for debate in parliament. This is something she knows is quite the challenge to make happen but knows that urgent action is needed to change and reform the interventions in autistic peoples lives which government and parliament are responsible and have power over them.
Winder highlights the stakes are too high to not do anything about it as negative interventions are known to cause cases of post traumatic stress disorder causing a severe hinderance of an autistic persons lives impacting negatively on mental health and wellbeing. Going on to reference how social masking over a long period of time in day to day life impacts mental and physical health causing a higher risk and factor of suicide rates within the autistic community because of misunderstanding and negative interventions. It is known that death by suicide is nine times higher of the rate of suicide of allistic people and is the biggest causation of death within the autistic community impacting on our life-expectancies. She states ‘It’s appalling’ and that autistic people need protection from normalising interventions like applied behavioural therapy (ABA) which often is compared and defined as a conversion therapy trying to force people not to be have, act and visibly be autistic and see our autism. Erasing it and seeing it as a problem much similar to that of other conversion therapies for sexual orientation and trans and non-binary genders that people LGBTQIA+ rights activists are campaigning for such ‘therapies’ to rid them of a protected characteristic in the Equality Act (2010) to be made illegal that cause harm to marginalised and minority groups and communities. From negative interventions for autism like ABA in highlighting the harm it causes to autistic people and how fundamentally ableist it is has turned those in the autistic community to spend their energy advocating and campaigning as janitors of those who thought to have been ‘doing the right thing’ but were causing harm.
When later on in conversation on ABA and whether it should be incorporated into the conversion around sexual orientation and trans gender and the legislation of banning such therapies but links of how it may be difficult to incorporate disability and neurodivergent conversion therapies in the same conversation as it would be in conflict of how the statutory regulator would be able to regulate and and legally challenge specific harmful interventions around the primary specific characteristic of autistic people.
This debate however, if got the ten thousand signatures needed would only apply to the health and social care interventions of autistic people in England and couldn’t challenge whether a body of health and social care interventions should apply to other areas of the United Kingdom as such briefs are devolved to administrations in Senedd, Holyrood and Stormont across Wales, Scotland and Northern Ireland. The debate and discussion sets to focus on those mistreated and misdiagnosed. Hoping to spark a wider discussion of what autism is and what classes as adequate and inadequate support and interventions with hope for more trusted professionals and those autistic people are referred to for support that they can be supported in the know that the professional fully understand us.
Previously, Westminster parliament has had introduced a legislation specifically for autistic people in two thousand and nine with the Autism Act (2009). Introduced under the Labour administration when Gordon Brown was prime-minister years out from when the NHS guidance and diagnostic language moved away from the use of the term ‘Asperger’s Syndrome’ to diagnosing and recognising it as Autism Spectrum Disorder. Times have change considerably in the conversations around autism as seen more women and girls receiving a diagnoses I thought it was worth questioning Winder about whether that the problems could be resolved if the legislation from 2009 could be reviewed, amended and revised to fit the needs and interests of autistic people in 2023. In response to my question also referencing the current national strategy making the case that neither the national strategy or the legislation has a regulatory body, regulating interventions saying with the Autism Act it hasn’t protected people from untrustworthy professionals those who work with and for autistic people. Making the case that any reforms should be to have a clear distinct record of qualified and adequate services and those who provide services. Winder makes clear that so called ‘treatments’ like ABA would not be allowed in a regulatory body who would police such interventions and be able to intervene in any harm or wrong-doing to an autistic person providing a shield to ensure competence and skill sets making comparisons to the register of sign interpreters that deaf and hard of hearing individuals have access to.
Whilst of the contrary of what was said in the interview around practicalities establishing how to police, regulate, report and make legal cases on abuses of power and authority in intervention and support is something that would be on going and would have to establish in the consultation stage. This is something that Winder understand and is prepared for that it would be a long-term campaign and it would take time to see this in fruition. Setting a new code of ethics that represents where the Autism Act 2009 fails to ensure a register of legally checked services, personnel and information on autism which could lead to further amendments of said legislation to ensure the code of ethics and set criteria for such services and those working with autistic people can easily follow a revised conduct that fixes failures.
How do you set out the guidelines and the code of conduct? Listening and consulting on groups of autistic people is important in this to democratise the making of said guidelines to autistic people and recognise for our characteristic provides an authority and stake in issues that affect us. In addition, to how you set out the guidelines Winder references the Equality Act of 2010 where in terms of disability.
The regulator she states would only be for specific interventions that are for autism and autistic people exclusively when I asked about whether she would wish for the regulator to focus on other neurological conditions under the neurodivergent umbrella. Referencing that the Westminster parliamentary petitions websites lack of space for characters and words as she may desire in the space of entering the title and contextual argument on the petition form online and might’ve chosen different wording. But then emphasised that she would wish whilst recognising the co-occurring conditions autistic people have and her own co-occurring condition of ADHD but insistent of how it should be exclusively for autism and looking at regulation and intervention guidance of autism. She states that there should be sub or sister regulators looking at other neurodivergent and neurological disabilities like neurological difficulties and disabilities that work at the side of an autism statutory regulator and regulating body.
Winder hopes to spark interest of media outlets from the likes of Sky and BBC in hopes of boosting and furthering the cause and campaign to increase signatures and demand for improved quality of interventions and support for autistic people. She is even considering in her town to use her musical voice and talent to go out on the streets and busk and with support of a friend to encourage and ask people in her area to get out their phones and open the link and sign the petition. Determined to make some noise she will endure to campaign on such a matter. A difficult challenge to try and then try again if needs be. Repeatedly demanding the necessity for change, awareness and education.
Past experiences of education and awareness haven’t quite gone to plan when she appeared in the live podcast radio programme on the BBC Radio 4’s ‘AntiSocial’ podcast when she came on to discuss the social media conversation around neurodiversity across TikTok discussing the hashtag #NeuroSpicy and the issue of self-diagnoses and neurodivergent advocacy culture. The podcast sees itself as peacekeeper in the cutlure wars. But when in the first conversation with Rachel she discussed how she was dissatisfied with the conversation debating the medical and social model of neurodivergent advocacy debating with a blogger who was ill-equipped and inexperienced on this matter. This as the petition weeks in stands at over two hundred signatures yet to get mainstream media representation of the petition. When she was on the BBC she didn’t feel rightly she had the time and space to say what she needed to say and advocate for herself in the constraints of a two sided debate casting doubt that the BBC would give autistic people the space on a show on social media conversations to tell our story in full. With the lack of space and time the BBC it cast doubts and faith that people like Rachel are given the needed space for us to make and argument for support.
This is a reminder that the podcast is a space for conversations with fresh space to tell stories in full and hear all the story and put these ideas foreword. For anyone with a campaign, idea and issue that is for the disabled and neurodivergent community the Neuro Rainbow Project gives a space for you to voice and explore just that
