Fiighting Back?:A personal story of FII and Parent Blaming?: Chapter?One

“She Doesn’t Do This In School!”

2006 was our annus horribilis.

In January, following a referral from our local carers’ support group to our local authority requesting help with supporting our children who had recognised disability and health needs, led to our attendance at a Child Protection Conference. This conference was 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.”

Neither the social worker or the conference acknowledged or mentioned a previous 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 disputed the current views of those professionals present at conference. Further, when I attempted to present any evidence in support of our viewpoint, I was informed that these could not be presented at Conference. These included photographs and video of our daughter in a distressed state and presenting physically challenging behaviours, including self-harming.

However, everyone around the Conference table, a total of 14 professionals, appeared to take great pains in notifying us that we were “good 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 previously we had been commended by social services, and now, because I had the misfortune to be unwell and wanted to seek the best for our children, 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.

The Conference Chair took great pains to stress that our daughter behaved very differently at school than at home, and the reason for her behaviour had to be established. However, she failed to acknowledge or accept that our daughter’s challenging and inappropriate behaviour occurred in every setting outside of school, irrespective of whether or not we were present.

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.

The Conference chair concluded that nobody doubted our sincerity or commitment to our children, however she was concerned that the children acted differently at school than at home (a common trait, I was later to discover in many thousands of children who are autistic, particularly girls).

When it came to a vote from all present, each voice aired was like a stake through my heart. Child Protection Conference decisions had to be unanimous.

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 social worker began by arguing that because our views (about our own children!) sometimes differed from professionals that this had a significant impact on the children.

One educational psychologist argued that my health presented a risk to the children (!).

Both school nurses present felt that the situation was “not the parents’ fault” and yet agreed with the conference decision.

A second educational psychologist expressed that we evidently wanted the best for our children, yet still agreed with the Conference decision.

One headmistress felt “surprised that the situation had ended in a Child Protection Conference” and that “the parents may have been overzealous in wanting the best for their children.” A second head mistress felt that the “family needed formal help.”

A local authority representative stated that “the family evidently needed help and this could be viewed as a way of helping the family.”

Our children’s paediatrician stated that she had known the family for many years and had “always been impressed by the parents’ sincerity and lengths that they have gone for the children but felt that the children did not require the level of intervention that the parents felt.”

However, one solitary voice, our children’s CAMHS specialist, spoke in our favour, but she too had to toe the line. Our children were now on the Child Protection Register! She went on to recommend respite care which she felt would be beneficial for the family as it would give “the parents a break and the children could be observed.” This never happened and neither child ever received any respite.

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 of autism. 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 Asperger Syndrome, a form 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 also have autism. 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 with no support in the family home.

Within 6 months, our son was diagnosed as having Asperger Syndrome, too. It was to be another 7 years before our daughter was diagnosed as being 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 ? years of age, by Drs Judith Gould and Sue Shepherd?.

Incidentally, they had assessed our daughter, both in clinic, and at home in 2006 when they found insufficient evidence to definitively diagnose her of autism, due to her co-morbidity (other conditions) and unusual presentation. Their request for further monitoring and assessment led indirectly to the whole Child Protection process, as “insufficient evidence at this time” was misinterpreted as “no evidence” by local professionals who decided to stop monitoring altogether.

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. This included email correspondence as recently as 2013 by Great Ormond Street Hospital a few weeks prior to an autism assessment on our daughter.

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, I had no idea how widespread institutionalised parent carer blame was for parents of disabled children. Naively, I thought that ours was an isolated and extreme situation. Over the coming years, I would have my eyes well and truly opened.