Next Research Project

A NEW TYPE OF CLIENT

In 2020 I started getting therapy referrals for parents who had suffered experiences of having their children or themselves misrepresented in professional paperwork. There were often low level accusations of bad parenting. The descriptions my clients gave me of the professionals involved were often cumulative and detailed. There were different dynamics and personality types being described but many stories I’ve heard contain elements of:

A minority of professionals policing with overt hostility from the beginning, seeming to have a ‘nip it in the bud’ attitude of parents and careers placing a demand on resources. The idea being that if parents understand there isn’t a compassionate professional to work with, then they will think twice about asking for what their child needs.
But many professionals were not operating strategically, they simply seemed to have a hard time conceiving that some children struggled in traditional education settings. In this instance the attitude was taken that the parent was not being consistent with the school’s directives. ‘parent-blaming is never far away, because parental labour is the cheapest remedy and because it is so deeply ingrained in culture.’ {Ulnicane, 2020 #138}
Many professionals simply had a desire to just get through the day with the resources available. In other words, the system isn’t really set up to support neurodivergent children and professionals are in a position of having to make do.

In the stories I heard there was a mix of feeling like the disconnect in perspectives were sometimes out of ignorance and other times purposeful due to limited resources. Lisa Lightner, a U.S. special education advocate writes about this when she said, ‘Sometimes I do believe it’s ignorance. But sometimes, I can’t help but think that it’s deliberate and that they are trying to convince us to go along with “their way” even though they know it’s wrong.’ Regardless of the reason for the difficulty the results were always harmful for the parents and child.

Another factor that I suspect was at play was a sense of pressure the professionals felt to not mis a safeguarding concern. In December 2021, Secretary of state for education, Nadhim Zahawi called for children to be removed if there was even a ‘hint’ of abuse. (cite & share link) When a child dies from abuse the professionals who knew the child or their family is often named and written about in the news, as having failed in their job and in their duty to protect the child. This is especially true of social workers if they were involved. They are storied as the professional who missed the abuse. The council is storied as having failed the child, and so councils apply a lot of pressure to the professionals to act. It is my opinion that safeguarding concerns are often raised by professionals who have a deep fear of being shamed, and it isn’t helpful if they happen to have a lack of understanding about neurodivergence and or they may have been offended by the child or parents involved.

The stories my clients brought all had different details

but their respoanses to what they had been through was the same. Lost sleep, crying, loss of joy in their life, fear of the phone ringing or any interaction with professionals, feelings of extreme anger, a sense of attachment to the professional relationships and feelings of shame. And an overall sense that others wouldn’t understand the intensity of their feelings or would see them as the problem.

I started to make a list of common themes the parents spoke about. For privacy this list is comprised only of general themes and no specific client data. In making this list I noticed parallels between the themes these parents were sharing and the experiences I heard from victims of domestic abuse. Below is a chart with themes from Special Education Needs and Disabilities’ (SEND) parents I sat with in the left column and the features of coercive control as defined by the Crown Prosecution Service in the right column.

Institutional Coercive Control v Personal Coercive Control
THEMES RECORDED FROM CLIENT WORK	CPS EXAMPLES OF COERCIVE CONTROL
Fear that their relationships with needed professionals would break down and that this would impact their child’s ability to go to school, get support and the parent’s ability to work.	An ongoing dependency on the perpetrator for support of basic needs to include the needs of one’s children / place of education or ability to work.
Being told that all other professionals share the same point of view, so that the parent had little hope of finding something different from someone else, should they be dissatisfied with one professional.	Being told that no one would believe them / validate their perspective.
Having one’s parenting choices called into question.	Encouraging self-doubt or blame to prevent disclosure to the authorities.
A fear they will be seen as irrational if they complain. Often the irrational mum or the SEND parent, pathetic for being bitter about their lot in life.	Creating shaming conditions in which the victim doesn’t feel able to talk about their experiences with others.
A fear that the complaint process will be deeply humiliating and further the already experienced trauma, with little hope of achieving justice or the correct support.	Threat of personal humiliation with little hope of escape.
Parents felt mentally exhausted trying to determine whether speaking up or staying silent was better for their child.	Controlling someone’s basic needs or their children’s needs to the point of exhaustion.

Interestingly the themes also seemed to present in similar orders.

1st Gratitude for the relationship. The wonderful doctor, teacher etc…

2nd A growing awareness of problems with the professional relationship, whilst questioning their own perspective. Am I overreacting? Am I the problem? They say it’s me.

3rd Trying to figure out how to get one’s child’s needs met without upsetting the unequal power dynamic between themselves and the professional.

4th Growing anxiety about repercussions should the relationship breakdown.

5th Feeling anxious, trapped helpless and exhausted.

The 2nd stage: A growing awareness of problems and ‘questioning their own perspective’ was for many was the most distressing as it caused parents to doubt themselves and to later wonder if they waited too long to act, or perhaps could have done more if they had had the confidence.

Examples of subtle discrepancies which might creep into the relationship include:

How language is used: ‘Parent refused to accept support offered.’

When details are extrapolated and presented without context: Not explaining why the parent disagreed with the offered support or felt it would not be helpful at this time.
Small inaccuracies: Stating a child has a mild case of X when their diagnosis states that it is severe. – This can mean that the institution doesn’t need to supply as much support.
Failing to give context with the facts: Stating the child was extremely upset and threw a book across the room, without explaining why. The behaviour may have been factually recorded, but extrapolating this from the context builds a misleading picture of the person as unpredictable, when in fact they may have been having a very predictable response to something which caused distress.
Including irrelevant pieces of information: ‘Mum is not British and doesn’t have friends in this country.’ This example was from paperwork written about myself in which the writer was suggesting I was a flight risk because I had no friends in the UK. Although this was beside the point, it was also untrue. I had been living here for 20 years and have both friends and extended family here.

Over time, as the parent remained compliant and grateful to the professional, there was an erosion of the parent’s power to protect their child. This awareness sunk in only when there was a big (rather than small) problem. By then all the little ways in which the parent and child had been misrepresented were now a solid picture with a history and paper trail portraying the child as ‘at risk’ and the parent as a ‘safeguarding concern.’ This was a feature of every story coming from a client who sought therapy around institutional abuse.

The Institutionalising Parent Carer Blame report has highlighted concerning issues regarding the treatment of families with neurodivergent children. Humiliation and intimidation tactics are frequently employed against these families in an attempt to manage government and institutional resources more efficiently. This situation leaves parents and families in an exceptionally vulnerable position, often subjected to multiple forms of abuse from various agencies. This is primarily due to the unequal weight assigned to professional accounts versus parental accounts, with the latter often dismissed as biased. To ensure fairness and transparency in such interactions, we propose granting both parents and professionals the right to make audio recordings of their meetings.

The Regulation of Investigatory Powers Act 2000 (RIPA) already permits the recording of conversations without consent for personal use. However, numerous professional organizations unjustly deny parents or caregivers the right to record conversations, even going so far as to threaten punitive actions, such as off-rolling children in private schools. Such restrictions are often justified under the guise of safeguarding students or patients, but audio recording meetings between adults’ family members and professionals poses no inherent risk to young or vulnerable individuals.

In the interest of transparency and accountability, we propose enacting legislation that explicitly forbids institutions, whether private or public, from prohibiting or penalizing caregivers for making recordings during these meetings. This change ensures that discussions between professionals and caregivers remain open and accountable, as they should be.

Furthermore, we recommend that parents should not be required to disclose their intent to record a meeting. This stipulation is essential because, even when laws protect this right, parents may face backlash for exercising their lawful rights. We advocate for a professional assumption that their conversations are recorded, encouraging them to be mindful of their words and to stand by their statements.

It is crucial to clarify that this right to record meetings does not grant parents the right to share recordings on social media or with third parties without consent. Instead, these recordings are intended for private use, serving as evidence of discussions or agreements and as reminders for all parties involved. Additionally, they may be used in legal proceedings if necessary.

By affirming the right to record meetings for the care of disabled individuals, we can foster transparency, fairness, and accountability in these crucial discussions. This measure respects the privacy of all parties involved while ensuring that the voices of parents and caregivers are heard and respected in the decision-making process. We call upon the UK government to act promptly in support of this essential reform.

THE UGLY DUCKLING

From the start of my research, I found that I kept being pulled towards the classic children’s story The Ugly Duckling, by Hans Christian Anderson. The Ugly Duckling is a fable about a displaced swan growing up in a paddling of ducks. The swan is badly judged for not looking or behaving like a duck. There are many metaphors in this story which correlate with themes raised in this research. These include:

(1) Ethnocentric judgments made about the swan when he is expected to look and act like a duck.
(2) How those in power create the discourses that govern all the farm animals.
(3) The scrutinizing of behaviour through ‘the gaze’
(4) The effects on the swan which included shame, feeling not good enough, becoming other-referencing and suicidality. But what I was most surprised to see captured by this allegory was the breakdown of the relationship between the mother and her son; and the impact this breakdown had on her son, who’s sense of okayness came from a parent who based their sense of okayness on institutional messages.

Come with me now, I will take you into grand society, and introduce you to the farmyard. You must bow your heads prettily to that Old Duck yonder; she is the highest born of them all.

The Old Duck stared, and said, “Look, here comes another brood, and what a queer looking object one of them is; I wish his mother could improve him a little.”

“That is impossible, your grace,” replied the mother; “he is not pretty; but I think he will grow up strong, and able to take care of himself. You must look at him the right way.”

but the poor duckling, who had crept out of his shell last of all, and looked so ugly, was bitten and pushed and made fun of, by all the poultry. So, it went on from day to day till it got worse and worse, and his mother said she wished he had never been born. Eventually Mother Duck left the Ugly Duckling who grew up without her.

In his adulthood he finally sees a bevy of swans. “I will fly away to them, to the royal birds, and they will beat me, because I, that am so ugly, dare to come near them. Better to be killed by them than to be pursued by ducks, and beaten by fowls, and pushed about by the girl who takes care of the poultry yard, and to suffer hunger in winter!” – (Anderson, 1888)

The story of The Ugly Duckling reinforces a binary opposition between normal and abnormal, acceptable and unacceptable. Because such discourses have been fully internalized by Mother Duck throughout her life, she eventually succumbs to the discourses over her intuition as a mother. For a while she works anxiously to reinforce social norms and expectations. But finally, after pages covering the mother’s evolution from anxiety to exhaustion, Mother Duck expresses the dark wish that her ‘Ugly Duck’ hadn’t been born. I suspect, this doesn’t come from a lack of love for her child, but rather it was a question of which pain would be more bearable. The pain of societal injustice verses the pain of not having had her son.

In January 2023, I read a post on Facebook. It was a public post that had over a million views, about a woman name Lucy Dunn, the mother to a child with complex needs. The author wrote:

Lucy was dealt a cruel hand – not by having her delightful son but by the system she entered when she had him. ….It is true that having a child with additional needs comes with additional challenges, but that is nothing compared with the challenges that come with ‘the system’…I often find myself describing this system as abusive and I find a lot of the trauma that these parents go through is not because their child has additional needs but because the system makes it impossible…They have to sum up and waste their energy day after day, that energy could be better spent directly with their child, … Lucy, like so many of the parents I work with was brave, and fierce and exhausted. Yet everyday she fought on until it became too much…Lucy is gone. She took her own life just before Christmas and society should hang its head in shame.