Fiona Sinclair

"I warn you not to fall ill, not to be old, not to be disabled or poor" - Neil Kinnock, speech of 7th June 1983

- And most certainly not to be autistic, or to love someone who is autistic, in a state that is hell-bent on social control.

Fiona Sinclair is the founder of Autism Rights, and mother of an autistic child. Now living in Ayrshire, she is a longstanding community activist, and successfully led a campaign to close a major waste incinerator plant near Inverness.

It is not just ID cards that threaten our  civil liberties, it is a whole array of legislation and policies that mount a cumulative assault on some of our most cherished ideals about the society we live in. In the long run, all our lives will be deeply affected by the legislation and policy that I have outlined in Autism Rights' Briefing Paper `Incompetent, Abusive, or both?" read here 

This paper makes a devastating case against a Scottish Executive that has indulged in the most asinine regurgitation of Westminster policies of control. While the London-based press has lifted the lid on many of the individual pieces of regressive legislation, specifically the policy and legislation on databases and the Mental Health Act, the Scottish media has virtually ignored even these. However, the really nasty stuff is in the interaction between a number of legislative and policy changes that clearly have been inspired and directed by the UK government, but have been pushed further and faster by the Scottish Executive.

Scotland's Mental Health Act, which was introduced after much controversy in 2003, enables the enforced medication in the community of people (i.e. adults and children) with `mental disorders`  under Community Treatment Orders.  The Westminster Department of Health's own research review recently concluded that these CTOs would be wholly ineffective.  The Scottish Executive has classed ASD as a `mental disorder`, and has thus categorised mental illness on a par with autism, which is a disability. SIGN, who publish clinical guidance on behalf of the Scottish Executive, are expected to recommend the `treatment` of people with ASD with dangerous pharmaceutical drugs, that are currently marketed for the `treatment` of children and adults labelled with ADHD.

The Scottish Executive's conference on ASD in November 2005 gave tacit backing to this guidance, in spite of evidence demonstrating the benefits of dietary change and nutritional supplementation, as against inadequate research into the effects of drugs such as Risperidone on children with ASD, and a scaling up of the official warning on the adverse effects of such drugs, which have been directly implicated in fatalities amongst children.

Place all of this in the context of a situation where parents may be threatened with the withdrawal of educational provision for their children if they refuse to drug them and where threats of the initiation of  child protection proceedings may be made, when parents push for services in healthcare and education that they believe are more appropriate to the needs of their children. At the tip of an iceberg of ignorance, wilful incompetence and intimidation, a disproportionate number of parents of autistic children will find themselves accused of Munchausen's Syndrome by Proxy (MsbP), where it is claimed that they are using their children to seek attention, mainly from health professionals.

The UK government has compiled guidelines on MsbP, which overlap with the international clinical criteria for ASD.  At the lower end of the iceberg, professionals frequently accuse parents of being responsible for their child's autistic behaviours or genuine medical problems, even where a diagnosis of ASD has been made. This is bad enough, you might think - but the absence of standards appropriate to the needs of people with ASD, the absence of enforcement of legislation or regulation  that support service provision, the general crass ignorance of ASD amongst education, health  and social care professionals and wilful incompetence within officialdom at both local and national levels all conspire to create the kind of hell that has culminated in suicides and other deaths of mothers and their children and widespread stress to people with autism and their families . Why would any service provider budget properly for services for people with autism and their families, when there are so many disincentives ranged against this?

Of course, some of these disincentives don't just apply to people with autism -  they also apply to other people with disabilities, carers, the elderly, the mentally ill and the poor.  Yet more shoddy legislation and policy reinforces an already oppressive situation:- The Adult Support and Protection Bill gives a local authority the power to take a vulnerable adult out of their family home against their will and without the right of appeal. It also includes the power to imprison any family members that resist such a measure. Thus, the very local authorities that are charged with assessing and providing a service, and who so often prove to be totally resistant to fulfilling these responsibilities in any competent fashion, have acquired powers to `punish` families who disagree with the provision on offer, or who are battling to achieve any provision at all.

The Scottish Executive's proposals for  `reforming the children's support system` make provision for `data sharing` on all children. but hold particular concerns over the way they will collate and distribute professional opinion on children with disabilities, because of the conflation of `child support` with `child protection` within these policies. Given the clear association that government is making between autism and pseudo-medical diagnoses such as MSBP,  there is a very clear threat to families with autistic children.

Although, in their totality, these legislative and policy changes have a worse effect on people with autism and their families, a number of these changes impact just as badly on other groups within society. The Mental Health Act makes specific mention of the all-embracing diagnostic label of `personality disorder`. Not only is this a contested diagnostic label  (even the psychiatrist behind his profession's diagnostic `bible` admits that most psychiatric labels cannot be scientifically verified),  it should be recognised as the Stalinist's all-encompassing solution for quiet disposal of a government's  `awkward squad`. We should take heed when `researchers reveal` that 1 in 20 people has a `personality disorder`, the incidence of which is much higher if you are on a low income or are unemployed .....

The choice for our future is clear – do we want to rebuild a civilised Scottish Society, or do we want to march relentlessly towards a Stasi State?

Go here for for more information on Autism Rights and how to get invoved in the campaign 

Comments

[AutismRights]

Although the legislation and policy referred to in this blog was put in place by the pre-May 3rd administration, it will not go away unless the new
Executive reforms or repeals this legislation and policy.

I would ask everybody to take the trouble to read the Autism Rights Briefing Paper, which is linked to from this blog - it's only 4 pages long and is fully referenced. There are many more people who will be affected directly or indirectly by the issues I've outlined - as I have indicated in the blog above.

I will keep everyone informed about Autism Rights' campaigning through the
Campaign News section of the Members Forum, but I would ask you, in the first place, to pass on these links to others and to email your MSPs with your concerns.

Many thanks,

Fiona Sinclair

[Rudiger]

All speculation, no evidence.

You are saying that bad things might happen to people with ASD, but you aren't saying clearly what you want to happen. Instead you refer to a four page diatribe which bangs on about the "Stasi state" but is so dense and impenetrable that the last thing it does is make a "devastating case" other than that you need to learn to use plain English.

What are you really after?

[cyberseraphim]

I haven't had any problems like this. I have an autistic son and we have wonderful support and help from the health and educational services - so far . Dietary change has no effect on autism and no one should be encouraged to buy expensive and often cynically marketed products in the vain hope of 'curing' autism.

I don't agree with accusing parents of autistic children of having Munchausens by Proxy but equally parents have a duty to act responsibly and not seek 'investigations' that are founded not on science or knowledge, but absurd speculation about the causes of autism.