Thursday, 24 May 2012
Duck Season, Rabbit Season
This blog is written by Carole Rutherford and dedicated to the memory of Debbie Storey, who died on May 24th 2005:
Debbie (who had AS) died after the mother of all fights to remove her son’s names from the ‘at risk register'. She was fighting this decision after allegations that she and her husband were using their autistic sons to meet their own emotional needs. They removed their sons from school to educate them themselves at home because their needs were not being met, and the boys emotional well being was suffering.
There is a very famous cartoon staring Bugs Bunny and Daffy Duck where they argue with one and other about what hunting season it is, while trying to convince Elmer Fudd that it is not the right season for him to be hunting them. It is a very funny cartoon where the two stars of the show pit their wits against each other in what is really a fight for survival.
For parents who have children with autism it is often ‘autism season’.
While I fully accept that there will be parents who have children with autism who are not acting in the best interests of their children (parents who have children with autism are like any other cross section of society) it would appear to me that no matter what method or directive is being used to try and locate parents who are not acting in the best interests of their children, parents who have children with autism remain amongst the most vulnerable parents who are still getting caught in the line of fire.
Parents who have children with autism have a history of being at risk and being told that they are not acting in the best interests of their children.
Ignorance is not bliss and a little bit of knowledge can be a dangerous thing when the subject that you know 'a little bit about' is autism.
A lack of autism specific training and understanding can have a disastrous impact on the lives of parents as it did for Debbie Storey and her family.
Many of the signs and symptoms of autism can be attributed to other things. Parents who have children with autism can all too often find themselves being pursued by overzealous professionals who have little or no understanding and have received no autism specific training.
In 2001 the Department of Health issued draft guidelines on recognising the signs and symptoms of children in whom illness is 'induced or fabricated by carers with parenting responsibilities'. It read like a check list for autism.
Concerns about these guidelines were raised by the autism community and the National Autistic Society, who met with Jacqui Smith - the then Health Secretary - and raised grave concerns about this guidance document and the impact it would have on parents of children with autism. The guidelines were changed but parents who have children with autism still find themselves being accused of exaggerating the needs of their children. In fact parents who push too hard to have the needs of their children met can sometimes find themselves in the glare of a very unwelcome spotlight.
Autism-in-Mind met with Lord Filkin (Minister for Education and Skills) along with the National Autistic Society and PACE on the 1st of March 2005, following the Debbie Storey case. This meeting was to highlight the urgent need for front line professionals, working in social care, to receive appropriate training in autism. All attending wanted to ensure that families would not have to suffer accusations of abusing their child in the way that Debbie and her family did.
Despite this issue being raised at a national level, and 7 years on, the situation remains the same. There are parents who have children with autism being told by front line professionals that they are not acting in the best interests of their children.
Front line professionals still lack appropriate and autism specific training.
There are concerns growing in the autism community about yet another initiative aimed at educating front line professionals, enabling them to spot and handle ‘highly resistant parents’.
Parents who have children with autism are sometimes seen as 'highly resistant parents', because they challenge and oppose professionals who have little understanding of their child and how their condition impacts on their lives. Parents fight for the needs of their child because their complex, often subtle, and fluctuating needs are not being met.
Just because a disability can be invisible does not mean that parents are making up the impact that it can have.
Can we be assured that professionals who are been trained in practical strategies to tackle obstructive behaviour and disguised compliance have also been fully trained to understand and with a depth of knowledge in autism?
Only when we can be assured that all of our front line professionals who are working with families with autism have been appropriately and specifically trained will the autism community at last be able to feel at peace and trust the professionals in their lives.
Debbie Storey was a member of Autism-in-Mind Campaign Group. Debbie won her fight for her children but then went on to lose her life because even after proving that she and her husband were not “consciously or unconsciously using their children to meet their own needs.” She was too afraid to press the medical professionals to find out why she was in so much pain and to pursue a diagnosis for herself, when she did it was too late. Her sons now live without their mother who put all her energy into protecting them.
We must fight to ensure that no parent is ever placed in the same position as Debbie.
Campaign Manager and Co-Founder Act Now For Autism
Co-Founder Autism in Mind