They Don’t Do This in School!
A Personal and professional accounts of parent carer blame:
Due to their heightened anxieties and specific sensory needs, many autistic children behave differently in school than at home. This can have a profound and lasting negative impact upon the family when parents seek support for their children’s needs.
2006 was our annus horribilis. In January of that year, a referral for help to the local authority requesting help to support our children, who had been identified as having significant special needs, led to our attendance at a Child Protection Conference. This conference had been convened “to consider the children due to parents seeking medical diagnosis which was impacting on the children’s needs.”
The social worker informed the conference that the Referral Team had received a letter from Carers UK in respect of our children which had mentioned a reference to possible autism. Without having met either of the children personally, she concluded that our parenting was “impacting on their physical, emotional, social and educational development.”
However, everyone present ignored the Children and Family Service Core Assessment completed only 14 months previously, by the same local authority, which had been very favourable to us as parents, and in which no less than eighteen professionals had been consulted. Indeed, this report from November 2004, began by stating “despite fatigue, stress and constant demands the children make in the home these parents seem equal to the task.” The social worker further goes on to report “parents can be commended in their persistence to seek explanation of diagnosis in an effort to 100% respond to their children’s needs, which other professionals might question.” And again, “children feel safe to “act out” these behaviours at home which could also be considered healthy.”
In addition, he wrote “there has been a dichotomy of (our daughter’s) social presentation within her family and elsewhere. Respecting this appears not always the case. It has caused parents to think professionals have questioned their abilities and motives. This assessment has not identified any concerns. These children should receive all the appropriate resources and support to attend their needs.”
And yet, despite my referring to this report, and providing direct quotes as above, the Child Protection Conference ignored all its findings and any factual written evidence which supported us as parents.
I had been diagnosed as having chronic fatigue syndrome early in 2005 and had been unable to work in my role as an administrative officer with the Department of Work and Pensions since April that year. This had culminated in my being retired on medical grounds from the Civil Service during the week before Conference. Far from being supportive, the professionals had almost unilaterally decided that my physical and mental health problems had a significant negative impact upon my ability to cope with the problems that my children presented and that my wife and I were solely responsible for any challenging behaviour that they presented.
Whilst still a baby, my daughter had been diagnosed as having a genetic condition, foetal anticonvulsant syndrome, which was known to be extrinsically linked to autism and challenging behaviour, and yet here I was being effectively blamed for my health problems harming the children!
It was almost unbelievable that a legitimate call for help for 2 children who had been assessed and reassessed by the Department of Work and Pensions as having significant disabilities, with contributions from multiple health professionals, should now be placed in this position. It appeared inconceivable to me that if everyone agreed that our children had disabilities and that we were good parents that a call for help could result in a Child Protection Conference being held. My ill health had already cost me my career and now a group of professionals, the majority of whom had never met either of our children, would determine their fate.
It was so surreal. Like the Magna Carta in reverse! Here we were guilty at the court of professional opinion, and no amount of facts in our favour was admissible. A year after being commended by social services, because I had the misfortune to be unwell and wanted to seek the best for our children, my wife and I we were being persecuted.
By the end of that traumatic meeting, I resigned myself to the fact that all the cards were stacked against us, and no amount of testimony or written factual evidence in our favour would be considered. Further, we had been informed that we would have no right of appeal at whatever was to be decided.
As mentioned, most of the Conference members had never met the children, and yet had been happy to listen to opinion, masqueraded as fact, and ignore fact-based evidence. This was truly a fait accompli, they’d made their minds up.
One by one, my wife and I had to hear platitudes about how loving and sincere we were as parents, whilst agreeing that they should be placed on the Child Protection Register:
The conference chair requested a psychological assessment of both parents as part of the plan going forward. Due to financial considerations and other factors, this was not carried out until several months later. The independent psychologist found no evidence of any psychological behaviour that impaired our ability to parent and criticised the Conference for the position that we were in. She felt that the children’s challenging behaviour and lack of formal autism diagnosis was preventing us from accessing appropriate service provision. She concluded that it was not our stress which was impacting upon the children, but rather the reverse, that our lack of appropriate support was responsible for our declining health.
However, despite this endorsement, our children remained on the Child Protection Register until the spring of the following year. Despite being under Child Protection, social worker visits became increasingly infrequent, and no medical professionals saw the children during that entire time.
Towards the final months of this harrowing process, it was suggested by our children’s CAMHS consultant that I may be autistic as “you like your facts Mr Crisp.” Consequently, I was referred for a diagnostic assessment. Unfortunately, the wait for this assessment added to the delay in the children’s names being removed from the Child Protection Register by a few extra months.
My late diagnosis of autism, in January 2007, at the tender age of 42 years, should have provided more clarity to the professionals with regard to my children’s disabilities. Both genetically and statistically, my diagnosis and the children’s presenting behaviours should have increased the likelihood amongst the professionals that they may also be autistic. Unfortunately, this was not the case. Instead, it was argued by some of the professionals that the children’s presenting behaviours were due to mirroring of my behaviours, rather than being intrinsically wired-in.
In the spring of 2007, our children’s names were unanimously finally removed from the register and we were given permission to pursue autistic assessments on our children, if we so wished. No apology was given for the immense stress that the previous long months had on our family or any indication that anyone had any responsibility, remorse or accountability for the trauma and devastation that had been inflicted upon us and our children. Or the immense strain that this whole process had placed on our marriage and family life.
We were now free to pursue autism diagnoses if we so desired, without prejudice, but no assessment of need, respite care or family support would be offered from social services for the remainder of our children’s childhoods.
We had been through hell and back simply for asking for help, and now having been traumatised by the stigma of Child Protection and had ourselves ripped open and laid bare, we were now cast aside, and back to no support in the family home.
Within 6 months, our son was diagnosed as being autistic, too. However it was to be another 7 years before our daughter was diagnosed as autistic. During the ensuing years, she was diagnosed with NLD (Non-verbal Learning Disability), ODD (Oppositional Defiance Disorder), autistic traits, OCD traits (Obsessive Compulsive Disorder), Joint Hypermobility Syndrome, SPD (Sensory Processing Disorder) before finally being diagnosed as autistic at The Lorna Wing Centre for Autism at the age of 15 ½ years of age, by Drs Judith Gould and Sue Shepherd .
During the latter stages of the CP registration, I registered a formal request under the Freedom of Information Act for access to our family’s local authority records. I discovered that very little new information had been received from health professionals from that previous Core Assessment in November 2004. It had just been reinterpreted very differently based upon conjecture and opinion masquerading as facts.
Unfortunately, the impact of being under Child Protection has remained nearly 15 years after our children’s names were removed from the CP Register.
Freedom of Information Requests and Access to Medical Records have confirmed that emails continued to be sent or replied to from the Conference Chair many years later, every time that an NHS professional enquired as to why our children had previously been under Child Protection. I was horrified to discover the following phrase which has haunted me to this day. It read “parents thoughts are bordering on fabricated and induced illness.” This was the first time I had heard of this terminology. Little did I know then how prominent these accusations were and continue to be for parents of disabled children.
It seems that there was a concerted effort to diagnose anything other than autism for our daughter, as if this would confirm what had been suspected by us and many professionals for over a decade.
By the time of my daughter’s diagnosis, I had been working with the National Autistic Society Adult Services for 7 years beginning as a support worker, before working my way up to team leader, person centred planning facilitator and co-deliverer of SPELL training. I had also begun to share my personal experiences with staff. I explained how I, like many other parents, had to fight for a diagnosis for my children. Staff were horrified at how we had fallen foul of the local authority simply for asking for help and support.
At that time, we incorrectly thought that such incidents were isolated and that we had been personally singled out for seeking help. However, various reports and news items over the past decade have confirmed that this was not, and indeed is not, the case.
Recent research studies have shown evidence that there is a culture of widespread institutional parent carer blame from many local authorities when parents of disabled children ask for help or support for their children. This has renewed interest my interest in fighting for the rights of all parents of disabled children and campaigning to end this institutionalised blame culture.
In recent years a number of organisations have campaigned separately on this issue including the PDA Society, Sunshine Support, Action for ME and The Erhlers Danlos Society and Fiightback (which offers support and guidance to parents and families accused of fabricated and imaginary illness or FII).
Thankfully, changes in legislation and improved training of health and social care workers have been proposed, but in the meantime hundreds, perhaps thousands, of parents of disabled children are still being affected by institutionalised parent carer blame and false accusations of fabricated and induced illnesses.
This article is respectfully dedicated to all parents of disabled children who have suffered, or continue to suffer, from a system which is culturally biased against them.