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Don’t Mourn for us by Jim Sinclair.

Autism Network International newsletter, Our Voice, Volume 1, Number 3, 1993. It is an outline of the presentation Jim gave at the 1993 International Conference on Autism in Toronto, and is addressed primarily to parents.

Parents often report that learning their child is autistic was the most traumatic thing that ever happened to them. Non-autistic people see autism as a great tragedy, and parents experience continuing disappointment and grief at all stages of the child’s and family’s life cycle.

But this grief does not stem from the child’s autism in itself. It is grief over the loss of the normal child the parents had hoped and expected to have. Parents’ attitudes and expectations, and the discrepancies between what parents expect of children at a particular age and their own child’s actual development, cause more stress and anguish than the practical complexities of life with an autistic person…

Full artcle: https://www.autreat.com/dont_mourn.html

Between a rock and a hard place: The problems and practices of professionals and care workers supporting autistic people with regards to their sexual autonomy, capacity and decision making. Dr Allison Moore and Paul Reynolds

This article presents findings from a research project which examined the problems of professionals and care workers working with autistic people in dealing with issues of sex and sexuality in their day to day work with service users. The research explored what professionals and support workers feel they can or should do when providing support for people whose intellectual disability or mental condition makes their sexual consent – being informed, competent and free from coercion – legally unreliable. As desexualising prejudices about people with disabilities recede, staff and their organisations are left with no guidance as to how to support service users with regards to the realisation of their sexual desires and the expression of the sexual identities. The law is unhelpful in that the 2003 Sexual Offences Act and the 2005 Mental Capacity Act make contradictory demands of settings in terms of the criteria for consent and its absence. Despite contradictions in the law and the absence of national guidelines, the overarching finding from the data is that staff are sensitive to the needs and desires of their service users and have developed an inclusive ethos and display positive attitudes in supporting the people they work with regarding to their sexuality. However, the contradictory demands of the SOA (2003) and MCA (2005) presented staff with a dilemma, One the one hand, staff and the organisation they work for have statutory duties to safeguard the people they support but, at the same time, they also work in a strengths focused way to support individuals to live a full and fulfilled life, which includes a recognition of their sexual desires, orientations and identities. At the core of staff concerns are judgements of the competence and comprehension of the service user, complicated by the difficulty of assessing competence, and recognising that competence is neither easily measured nor consistent amongst service users.

NA asked Dr Moore what prompted her to carry out this research.

“Supporting autistic people can be a highly rewarding job but it can present some unique challenges, (as I know from working within a supported living house with a number of adults) especially where sex and sexuality is concerned. Research shows that autistic people develop sexual feelings in the same way as anybody else, but autistic people are often not seen as sexual beings. Many disabled people are seen as ‘asexual’ or in need of protection when this isn’t necessarily the case. I wanted to try to look specifically at what issues and problems are faced by professionals and care workers in their work with people with autism, that makes consent legally unreliable in respect of sexual desires, and how do they manage these issues and problems in practice? This is a very grey area and supporters are not helped by competing and confusing legislation. I also wanted to see what issues and problems are faced by service supervisors and managers in their work organising services for people with autism in respect of sexual desires, and how do they manage these issues and problems in practice? 

Training and education for all people involved in the care and support of people with cognitive differences is patchy at best, so I wanted to look at the value of and the problems with current policy, advice, guidance and training for professionals and care workers in their work with people with autism, which makes consent legally unreliable in respect of sexual desires? By this I mean, simply because a person is seen to lack ‘capacity’ in one area doesn’t mean they lack capacity to consent to a sexual relationship and how do the staff balance the need for protection with the human rights of the person? I then wanted to see what changes in current policy, advice, guidance and training for professionals and care workers could be made which would enhance their practice in their work with people with autism, which makes consent legally unreliable in respect of sexual desires?

The research was really rewarding and the report has a number of recommendations that can be applied to all agencies and services.” 

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