with Katherine Uher, parent and psychotherapist and Benji Uher
We’ve run a number of articles that feature the injustice of staff in local authorities and health services using parent-blaming as a tactic to avoid living up to their statutory responsibilities, or excuse their own professional deficiencies. The issue is also being researched by academic, Professor Luke Clements
One parent who knows all about this insidious practice is Katherine Uher, parent of an autistic child and a psychotherapist who is herself neurodivergent. She is fighting a court battle about disability discrimination and wants to speak more widely about what she and her family has been put through.
Blaming parents for professional mistakes must end by Katherine and Benji Uher
Most SEND parents will have experienced some level of parent-blaming, whether it’s a head teacher tutting as their child is late for school again, or formal letters threatening fines for non-attendance. It might be the questioning of routines and rules at home, or the suggestion that the child would fit better into the school setting if only the parent did something differently. For many years I didn’t put a name to this behaviour or consider how offensive it was. My focus was on presenting myself as a ‘good parent’, trying to show the professionals that I was doing everything they wanted. Eventually, I realised they were blaming us for our child’s difficulties.
Parent-blaming is when a professional or organisation involved in the care of children, place blame on parents in an attempt to distract from their shortcomings or alleviate their responsibility. Examples of parent blaming might be accusing the parent of exaggerating their child’s needs.[i] Alternatively, professionals may claim that the child's presentation is due to 'bad parenting', rather than a developmental disability[ii]. In both cases, this tactic is used to move accountability away from the professionals and shift scrutiny on to the parents, which is deeply distressing to the entire family.
Faulty professional memory leads to an egregious mistake
In July 2018, my autistic son's psychiatrist provided incorrect information about him to his school’s SENCO. The incorrect information was so bad it led to social workers visiting our family. I phoned the doctor immediately to inform him of his mistakes. He checked his notes and agreed that what he told the school did not correspond with what he recorded from our last meeting and he hadn’t had his notes to hand when he passed on this information to the SENCO. The doctor apologised and promised to make corrections with the school and social workers but as weeks passed, he made no effort to do either.
Threatened with humiliation if I didn’t let it go
The erroneous statements made about my son were not small and would follow him so over the following months, I sent multiple polite reminder emails, asking the doctor to make the promised corrections. After months of no response, I brought it up during a phone appointment. At this point, he snapped, “This seems to be a theme with you”. He then told me I was overly concerned with the information’s accuracy because I was autistic; like many SEND parents I too, am neurodivergent[iii]. The doctor then said if I wasn’t happy with his service, I should complain to the Trust he worked for, stating: ‘It’s good when people complain because everything comes out’. I understood the implication from this to be that if I reported what had happened, things would be said about me and/or my son to humiliate us.
I wasn’t specifically sure what might be said but I had general concerns that it would be something like I was a difficult or inappropriate mother, or my son was someone who posed a risk to others. In actuality, the doctor was trying to avoid the discomfort of correcting his mistakes with other professionals by implying a threat of humiliation or possibly another safeguarding investigation. I felt powerless.
All I wanted was for clear corrections to be made. The law dictated that the doctor should make corrections, but I couldn’t force him. Complaining and suffering the consequences felt like my only option.
An unfair, discrediting investigation
The doctor was right. The internal investigation focused on me as a parent and never addressed the issue of the falsified information about my son. The investigator fabricated further information about my son, and this time, about me too. Besides falsifying my data, the investigator referenced an assault I suffered in my early 20s and used this to suggest I was an ‘inappropriate’ mother.
The investigator described me as acting ‘entitled’, ‘demanding’ to see my son’s school records. It seems unbelievable that in her position, she didn’t know all parents are legally entitled to view their children’s school records. I am perplexed that doing so was framed as a negative. Surely, if I showed no interest in my son, that too would have been framed badly. The bottom line is, if professionals want to make a parent sound bad, there is little the parent can do to avoid it.
This document was humiliating. Everywhere I went to seek justice I was immediately discredited because of what had been written about me. And as an autistic person, I was easy to discredit. The Child and Adolescent Mental Health (CAMHS) team relied on the societal stigmas about autistic people to protect themselves from being held accountable from their errors. The humiliation I felt wasn’t just because of what the investigator wrote, but also because another doctor thought it was acceptable to place this in my son’s medical file, making this document available to all medical professionals working with my son. It felt like we were animals under observation with onlookers unable to imagine we had feelings about how we were viewed. It is a devastating feeling to be constantly dehumanised and helpless to change the treatment. For some people the devastation is too much.[iv]
Legal system not upholding the law
Frustrated, I filed a discrimination and data breach claim against the NHS. A year and a half after bringing the claim, it was struck out by a judge who ruled my discrimination claim was out of time, failing to acknowledge the data breaches. My application to appeal was denied. After exhausting my avenues for a legal resolution within the UK, I submitted an application to the European Court of Human Rights to re-examine my case. At the time of this article’s writing, I am waiting to hear if they will look at my claim.
Shortly after I submitted my application, the NHS made a modest financial settlement to my son. However, they still refuse to acknowledge the parent-blaming tactics used during their investigation of further falsified information about him and punishing me for trying to protect my son. Even today I can’t say what alternative I had. There is simply an ongoing pretence that ‘parent blaming’ doesn’t happen. Or perhaps, an unspoken belief that it is acceptable. It is not.
Parent-blaming is a human rights issue
There is something particularly cruel about making life harder on parents who are trying to protect or advocate for their disabled child but sadly in the UK, tactics like I have described are all too common. Many parents and carers fear that if they challenge the institutions meant to support their children they’ll be described as difficult, emotionally unstable, or potentially ‘inappropriate’ parents. Treating someone less favourably because they are working to advocate for someone with a disability is classed as disability discrimination. It shouldn’t happen, but it does happen, frequently, and many people fear they won’t be supported by the legal system.
My younger child, Benji has written the following statement for this article:
“Often the neurodivergent perspectives are seen as inferior. Because of that assumption we are treated like problems to be solved. Professionals often take the attitude that if we are not convenient for them, then we are a burden. We get called ‘difficult’ and our right to experience the world differently is ignored. This behaviour can be subtle, but even microaggressions, after a while, cause trauma. This can happen to anyone, but it disproportionately affects neurodivergent families who are just trying to advocate for themselves or their children. This is institutionalised discrimination and these acts, committed against SEND families, have become so normalised within our society that people don’t recognise it. It is never okay to prioritize one person’s sense of convenience over another person’s basic well-being.”Benji
What can you do to protect yourself
As my experience shows, there is not a fool-proof way to prevent parent-blaming tactics. My suggestions include:
- Documenting exchanges as much as possible (including dates and times, emails and phone calls) and making recordings of meetings whenever possible.
- Requesting to see everything that is written about you or your child by doing a freedom of information request. Although this can be an emotionally difficult exercise, it’s important to know what is being said. You can visit the Information Commissioner’s Website for guidance on how to make an FOI request and what you can expect from the school or body you are requesting from.
- Report inaccuracies in writing immediately. Try to be factual and not emotive when declaring a statement to be incorrect. Also highlight statements of opinion and ask that they be rewritten in factual ways and that context is included.
- When going to a meeting try to bring someone along for moral support, or help with advocating or note-taking. This person can double up as a witness should you ever need one.
- Use agencies that offer support. In my experience the people working in these organisations usually have a wealth of knowledge and simply feeling like someone is on your side can offer a great deal of emotional support. These include
About Katherine Uher & Benji Uher
Katherine was diagnosed as autistic when she was six (1983). Growing up, she became interested in understanding her differences which led to an interest in psychology and eventually career as a psychotherapist. She is close to finishing her PhD at the University of Edinburgh. More can be read about her research here
Today, her oldest child is studying at the Open University. Her youngest Benji (age 14) contributed to this article and is interested in transgender studies and activist writing.
- [i] www.specialneedsjungle.com/fabricated-or-induced-illness-fii-and-perplexing-presentations-new-guidance-for-social-work-practitioners/
- [ii] www.specialneedsjungle.com/social-care-tactics-send-problem-parents/
- [iii] www.specialneedsjungle.com/dad-asd-adhd-never-give-up-fighting-neurodiverse-childrens-educational-rights/
- [iv] www.thenorthernecho.co.uk/news/20060926.inquest-told-zoe-zaremba-driven-death/
- Additionally: FII and Perplexing Presentations: What is the Evidence Base for and against Current Guidelines, and What are the Implications for Social Services?
- Urgent change is needed to stop the institutional culture of parent-carer blaming
- Protecting Parents from False Allegations of Fabricated or Induced Illness (FII)
- Fabricated or Induced Illness (FII) and Perplexing Presentations – New guidance for social work practitioners
- The worrying trend of social care tactics to target SEND ‘problem parents’
- A new SEND future promised…but councils are still parent-blaming
- “Impowering” the future of SEND where parents and SENCOs just need to be less “demanding”
- What schools need to know to support learners with hypermobility and Ehlers-Danlos syndrome
- Racial discrimination and SEND: Why was I accused of harm?
- Know your child’s rights to social care support
- Does child protection guidance discriminate against disabled children?
- Children’s Social Care Review: Are disabled children ‘someone else’s’ problem?
- Finding the racial minority voices in SEND
- It’s NOT your fault: An autistic teen’s comprehensive guide to surviving being bullied
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