Child and Adolescent Mental Health Services (CAMHS) in the UK exist to help children and young people who are experiencing mental health problems. Despite this, Autistic children and young people are finding that such services either refuse or fail to deliver meaningful intervention, even when they are in the depths of mental health crisis. One of the ways that they do this is through positioning their parents and carers as being at fault for the young person’s mental health problem.
What is institutional parent/carer blame and why is it relevant to Autistic people and their families?
“Disabled children and their families are one of the most severely disadvantaged groups in the UK. They are ‘significantly more likely to live under conditions that have been shown to impede development, educational attainment and adjustment to and increase the risk of poor health, additional impairment and social exclusion’.
Institutionalised Parent/Carer Blame is the practice by societies institutions of taking an adversarial approach to supporting children and young people. In the context of social care, this often looks like issuing safeguarding proceedings when a needs assessment is required. Autistic and disabled families run foul of this far too often (as mentioned in the quoted report). Sadly, CAMHS also engage in this kind of practice.
What is the most common form of parent blame in CAMHS?
The National Institute for Health and Care Excellence (NICE) recommend parenting courses as “evidence-based interventions”. In particular, these courses are often aimed at parents of Autistic children. Unfortunately, not only are these courses often unhelpful, they position parents who are likely to be disabled themselves as the root of their child’s struggle. Failure to engage with the tools of this parent/carer blame can lead to social care involvement and safeguarding reports. It is the weaponisation of the system and defensive practice.
It is failing Autistic children.
Why do CAMHS engage in institutionalised parent/carer blame?
In my opinion, a significant factor in the practice of parent/carer blame is the need to gatekeep resources, coupled with a failure to understand Autistic children and their families within their unique context. In social care, this can be seen by the absence of clear guidance on how to approach disabled children and their families in the Working Together Document (2018). This sets the stage for countless inappropriate safeguarding referrals and systemic hostility.
Not only are CAMHS (self-professed) to not have the skills or knowledge to work with Autistic people, they are losing important resources year on year.
“…government statistics show a 25% increase in the number of young people with a mental health need – from 61,830 in 2019 to 77,390 last year.”
Despite the post-COVID increase in mental health problems amongst young people, funding and resources for CAMHS have not changed in a positive way. This has led to a shortage of skilled staff and a culture of defensive practice. Autistic young people, like many disabled people, are treated as an acceptable loss.
What is the result of parent/carer blame for Autistic families?
“…one in five GPs (18%) knows of a patient who has tried to, or taken, their own life after being refused care – often on the justification that their condition was not ‘severe’ enough.”
Not only are Autistic young people losing their lives due to CAMHS failures, there is an ever present risk of family breakdown. Families who can not get the correct support risk harm to the entire family unit, not just the Autistic young person in crisis. The victims of CAMHS failures are a far wider group. We hurt when our loved ones hurt. Yet, CAMHS are still willing to contribute to the criminalisation of parents whose only crime was to ask for help.
This article was co-authored by David Gray-Hammond and Tanya Adkin
This article includes exerts from interviews conducted by David, all interviewee’s gave their permission for quotes to be used.
Tanya has demand avoided weighing in on this topic for quite some time. Not for no good reason. Tanya has felt torn with this topic and the potential outcome of the petition that has been circulating and included in David’s previous articles on CAMHS. This petition has been signed by nearly 190,000 people as we type this. The number is climbing. The petition shines a light on the routine refusal of services such as CAMHS to provide mental health support for Autistic children and young people.
Neither of us have ever been quiet about our opinions on statutory services for Autistic young people, Tanya especially is a firm proponent of the phrase “CAMHS kills kids”. This might sound extreme, but in our lines of work we have seen their lack of competence have life altering/ending consequences.
If this petition succeeds to its fullest extent, and the doors are flung open as tens of thousands of Autistic children across the country flood into CAMHS departments (unlikely to happen quite like this, but bare with us), what awaits us on the other side of those shiny doors? Doors that Autistic people very rarely get to see the other side of.
You’d be forgiven for assuming “support” might be found there. That’s what CAMHS is there for, right? Our biggest fear is that we are just waiting to be disappointed at best, and at worst, the mental health of tens of thousands of Autistic young people is going to get significantly worse.
What might CAMHS offer?
“Services are still being designed without the involvement of the people using them. There is chronic under-funding and under-staffing which is undoubtedly having a huge negative impact on outcomes.”
Charlotte, CAMHS Professional
CAMHS may offer:
Medication–
This has it’s place, but 9 times out of 10, in our experience, Autistic people present with mental health issues (especially young people that have been subject to the trauma that comes from an education system not fit for purpose, and woefully underfunded) due to unmet needs. There is no amount of medication that can fill the space where education falls short. It’s akin to sticking a plaster on a stab wound.
Talking Therapy–
If an Autistic young person has experienced enough trauma to feel they need to access mental health services, it’s highly likely that they will be alexithymic. The first thing to suffer when a child is traumatised is their interoception. If they can not express how they feel, talking therapies (usually based in CBT) are likely to reinforce the medical model view that they are broken and can not be fixed. Furthermore, they’ll mask through it. Masking is a leading predictor of suicidality in Autistic people (Higgins et al, 2021; Adkin, 2023).
Neuronormativity is another factor to consider, if the person who is helping the child or young person comes from a neuronormative perspective that “neurotypical” is the gold standard of being that everyone should strive for, then you’ve given a young person something else to fail at (Gray-Hammond and Adkin, 2022).
Competence among professionals is notoriously lacking when it comes to Autistic culture and experience (Gray-Hammond and Adkin, 2023). One study found that only 17% of Autistic young adults rated clinical services “very useful” (Crane et al, 2019). This in turn adds to the Double Empathy Problem. Therapists are not immune to this. We can see this again reflected in a petition asking CAMHS to acknowledge the existence of Autistic burnout.
Parenting Courses–
You can’t parent away Autistic trauma (Gray-Hammond and Adkin, 2021) or burnout, or really any other mental health concern for that matter. Not only is it extremely patronising, it also risks parents being taught harmful, outdated methods based on the lack of competence of those designing and delivering said courses. This leads nicely onto our last offering on the CAMHS shitlist.
Parent Blame–
Institutionalised Parent/Carer Blame (IPCB) is a real phenomenon (Clements and Aiello, 2021), and the NHS is an institution. The thing about IPCB is that it covers the lack of professional competence and protects their egos by shifting the onus of responsibility onto the parent and subsequently social care. It’s also a fantastic cost-saving tool. Unfortunately, it often has devastating consequences. It’s not only the young person not getting their needs met, it’s the trauma of parents believing they are responsible for their young person’s mental health difficulties. The trauma accrued from social care involvement. The worst but not uncommon occurrence of an accusation of fabricated and induced illness (Gray-Hammond and Adkin, 2022).
” I worry about staff knowledge levels regarding up-to-date autism practice and the nature of the interventions offered”
Jenny, Parent of child under CAMHS
What do Autistic children and young people with mental health concerns actually need?
“Practitioners need to be better equipped to recognise the differences between treatable mental health difficulties, and challenges within the context of autism”
This is absolutely essential to understand the sensory profile of an Autistic person. It allows us to make provision and adjust the environments they exist in accordingly. This in turn reduces the impact of sensory trauma (Fulton et al, 2020). This also affords the young person and the people around them understanding of their needs. It reduces anxiety and builds self-advocacy, while simultaneously helping develop coping strategies.
There’s one problem with this, there are not enough qualified OT’s. There is a workforce crisis across social care and the NHS (Brexit doesn’t seem like such a bright idea after all…). This is just for regular OT’s. To become a sensory integration OT you need approximately two years extra post-graduate study (Can’t see the government finding a magic OT tree at the bottom of the garden any time soon).
Mental Health professionals that will call out the school system for the trauma they cause
Unfortunately, it’s not considered “professional” to call out other statutory services. Health professionals are often told that they can not comment on education because it is outside of their remit. Tanya would argue that safeguarding is everyone’s remit (David agrees). We would remind professionals that physical and mental health have legal parity (Baker and Gheera, 2020). If a teacher willfully broke a child’s leg, it would be on national news. Yet, routinely restraining an Autistic child into a traumatic environment is the norm (Gray-Hammond, 2023). Or even worse, threatening parents with either social care (safeguarding) or financial penalties for non-attendance.
Competence
As previously mentioned, we need professionals that fully understand Autistic experience and culture. Everything from masking to monotropism, burnout to community-connectedness (Botha, 2020). Without competence, you can’t have safety because the person will not be aware of their own neuronormative viewpoints. The cycle will continue.
“I remember one clinician telling me, ‘there’s not much you can do with them’ as in therapy for autistic children.”
Jane, former CAMHS Professional
Where does this leave us?
We are pretty much stuck between a rock and a hard place. On the one hand, it’s a question of supply and demand. If we demand, theoretically they should supply. In reality, how many of our children do we need to throw under the CAMHS bus until they get the message? This doesn’t stop at a petition. As any SEND parent will already be aware, this is just one rung on a never ending ladder of fighting, advocating, and holding professionals, services, and our government to account. So please sign this petition and help us place our Autistic feet on the proverbial ladder.
Adkin, T (2023) Mask on, Mask Off: How the common understanding of Autistic masking is creating another mask. Emergent Divergence.
Baker, C. and Gheera, M. (2020) Mental health: Achieving ‘parity of esteem’. HM UK Government.
Botha, M. (2020). Autistic community connectedness as a buffer against the effects of minority stress (Doctoral dissertation, University of Surrey).
Clements, L., & Aiello, A. L. (2021). Institutionalising parent carer blame. The Experiences of Families with Disabled Children in Their Interactions with English Local Authority Children’s Services Departments. Cerebra. University of Leeds.
Crane, L., Adams, F., Harper, G., Welch, J., & Pellicano, E. (2019). ‘Something needs to change’: Mental health experiences of young autistic adults in England. Autism, 23(2), 477-493.
Fulton, R., Reardon, E., Kate, R., & Jones, R. (2020). Sensory trauma: Autism, sensory difference and the daily experience of fear. Autism Wellbeing CIC.
Gray-Hammond, D. (2023) Restraint and seclusion in England’s schools. Emergent Divergence.
Gray-Hammond, D. and Adkin, T. (2021) Creating Autistic Suffering: In the beginning there was trauma. Emergent Divergence.
Gray-Hammond, D. and Adkin, T. (2022) Creating Autistic Suffering: Fabricated or Induced Illness, state sanctioned bullying. Emergent Divergence.
Gray-Hammond, D. and Adkin, T. (2022) Creating Autistic Suffering: Neuronormativity in mental health treatment. Emergent Divergence.
Gray-Hammond, D. and Adkin, T. (2023) Creating Autistic Suffering: Autistic safety and neurodivergence competency. Emergent Divergence.
Higgins, J. M., Arnold, S. R., Weise, J., Pellicano, E., & Trollor, J. N. (2021). Defining autistic burnout through experts by lived experience: Grounded Delphi method investigating# AutisticBurnout. Autism, 25(8), 2356-2369.
This article was co-authored by David Gray-Hammond and Tanya Adkin
The NHS defines the role of social care as being;
“…about providing physical, emotional and social support to help people live their lives.”
This sounds like a wonderful, albeit vague, concept. Perhaps it would help to look more closely at the law associated with social care. Let’s go back to 1970 and look at the Chronically Sick and disabled Persons Act. For the purpose of simplicity, let’s take a snapshot of what they are supposed to provide for disabled children according to this legislation:
“(a)the provision of practical assistance for the child in the child’s home;
(b)the provision of wireless, television, library or similar recreational facilities for the child, or assistance to the child in obtaining them;
(c)the provision for the child of lectures, games, outings or other recreational facilities outside the home or assistance to the child in taking advantage of available educational facilities;
(d)the provision for the child of facilities for, or assistance in, travelling to and from home for the purpose of participating in any services provided under arrangements made by the authority under Part 3 of the Children Act 1989 or, with the approval of the authority, in any services, provided otherwise than under arrangements under that Part, which are similar to services which could be provided under such arrangements;
(e)the provision of assistance for the child in arranging for the carrying out of any works of adaptation in the child’s home or the provision of any additional facilities designed to secure greater safety, comfort or convenience for the child;
(f)facilitating the taking of holidays by the child, whether at holiday homes or otherwise and whether provided under arrangements made by the authority or otherwise;
(g)the provision of meals for the child whether at home or elsewhere;
(h)the provision of a telephone for the child, or of special equipment necessary for the child to use one, or assistance to the child in obtaining any of those things.”
Unlike the NHS definition of social care, this is a fairly broad and specific piece of legislation that lays out exactly what local authorities are legally required to provide to disabled children. If we look at section 17 of The Children’s Act (1989), the provision of services that can be provided by social care is pretty much unlimited at the discretion of the director of Children’s Services. As long as it meets one of the areas identified in the Common Assessment Framework. The Children’s Act (1989) defines a “Child in Need” as;
“(a)he is unlikely to achieve or maintain, or to have the opportunity of achieving or maintaining, a reasonable standard of health or development without the provision for him of services by a local authority under this Part;
(b)his health or development is likely to be significantly impaired, or further impaired, without the provision for him of such services; or
(c)he is disabled,”
This essentially means that if health and development is going to be “impaired” or “further impaired” without provision, there is nothing that can not be covered by social care. It is essentially open ended because of the individualistic needs of disabled people and their families. At a glance this sounds wonderful. No disabled child should ever be at a disadvantage. Unfortunately, those that have tried to access these services have had a vastly different experience. Why is there such a gap between law and practice?
We challenge any parent of a disabled child to ring up the local authority and ask for any of the services outlined above. These resources don’t exist. All that does exist for parents of disabled children is bureaucracy, complaints, gaslighting, invalidation of difficulties, and as the cherry on top; parent-blame. The truth is that one of the roles of a social worker is about the distribution of services and providing the things that the law outlines. When those resources have been stripped away, and there is nothing for social care to give, what is left? The lens of safeguarding
The policy and ethics of social work is changing. The Working Together to Safeguard Children (HM Government, 2018) document does not even specify anything for disabled children. It’s as though their existence has ended because of the systematic defunding of services, and no one seems to have noticed. Clements & Aiello (2021) argues that this is unlawful and discriminatory; We would agree that completely ignoring the existence of disabled children in a social care capacity fundamentally alters the purpose of social care, without explicit statement of it’s new purpose. Here’s how this plays out;
Parents approach social care to ask for an assessment regarding the provision that the law specifies social care should provide.
Social care automatically apply a lens of safeguarding to said child.
There are no resources to give.
The only function that remains for social care is to focus on the parenting of said child. Institutionalised Parent/Carer Blame
Parents complain about unlawful restrictions and practice, and get labelled as difficult parents, or serial complainers.
Fabricated and Induced Illness, accusations of exaggerating your child’s difficulties for personal gain, caught up in safeguarding processes due to the absence of due process for disability, or if you dodge all this; you may be able to slink away with no resources, no provision from social care, but still with your family intact.
Truth be told, without the resources we are at the point that if we look at this objectively, we have to ask; what is the role for social care with regards to disabled children? Ethics in social care
Social care values and ethics (as outlined in the code of ethics document (2021) produced by The British Association for Social Workers) covers three main values;
“1. Human Rights
2. Social Justice
3. Professional Integrity”
None of the above meets any of these values. Not by a mile. Social workers are being set up to fail. They are set up to be the scapegoats for the effects of the governments practice of defunding essential services for disabled children. The short-sightedness of this is immense because the provision of these services for disabled children are explicitly recognised as vital to the health and development of disabled children. If the health and development of disabled children is significantly impaired, it will create a safeguarding issue. Defunding services for disabled children creates more cost-strain on safeguarding services, who are not specialists in disability, and feeds into the culture of defensive-practice, gatekeeping of resources, and parent-blame.
Tanya is routinely approached by parent’s as she works in the field of social care. These parents want advice after reading the legislation about accessing provision. The heart-breaking truth is that she has to tell them there is no provision that exists without it being legally enforced. Parents of disabled children are faced with an ugly truth that there is no adequate support for their child from social care. What do we do instead?
This is where we have to examine;
What the law says.
Is it enforceable?
What is the cost both financially and mentally?
Do the pros outweigh the cons?
Realistically, in our experience the most effective way to assess, identify, and obtain provision for disabled children is through an Education, Health, and Care Plan (EHCP). That in itself can be an intense and lengthy legal process. We can say one of the benefits is the Special Educational Needs and Disability Tribunal’s (SENDisT) role in the appeals process regarding EHCP’s. They are an external tribunal service that look at the legalities regarding the needs and provision for disabled children. These tribunals are overwhelmed meaning that the EHCP process (with appeals) can take upwards of 18 months. You may need independent reports, legal representation, and an abundance of cognitive resources. While you are waiting for all this to happen you are stuck in the parent-blame cycle that we mentioned above.
The only way that any of this is going to change for the better is for an increase in public money investment into a sector that is, quite frankly, running on empty.
One of the positives is that around 96% of EHCP tribunal appeals end in favour of the parents;
“SENDIST panels upheld local authority decisions in just 207 of 5,600 hearings in 2021-22 – an LA success rate of 3.7%” – Keer (2022)
At first glance this looks like a positive for parents, but it is evidence that local authorities are using the overwhelmed and lengthy tribunal appeal system to defend resources that don’t exist, and avoid their statutory requirement for the provision of services.
As is always the case, disabled people are at the bottom of the pile yet again. Viewed as a drain on societies resources, directly contributing to ableist and discriminatory attitudes that are a pervasive theme throughout disabled peoples lives. Therefore creating more Autistic suffering.
If you would like to play a part in trying to improve one small part of this, click here.
References
Clements, L., & Aiello, A. L. (2021). Institutionalising parent carer blame. The Experiences of Families with Disabled Children in Their Interactions with English Local Authority Children’s Services Departments. Cerebra. University of Leeds.
HM Government (1989) Children’s Act
HM Government (1970) Chronically Sick and Disabled Persons Act
Keer, M (2022) SEND Tribunal 2022: With a 3.7% LA success rate, what will it take for the Government to finally understand the law matters? Special Needs Jungle
Policy, Ethics, and Human Rights Committee (2021) The Code of Ethics for Social Work. British Association for Social Workers
“The state creates the rules and dictates the processes to be followed: processes that fragment, silo, and compartmentalise, and in doing so, generate the complexity that is the root cause of clustered injustice.”
Clements, L. (2020)
As disabled people not only do we have to consider how our disability affects us inday to day life, but we also have to consider the amount of ‘life admin’ that we encounter daily. Policies, procedures, and legal processes are in place to supposedly serve us, but what they actually serve to do is make an awful lot of these aids and services inaccessible.
We have the Equality Act (2010) that serves the purpose of making it unlawful to discriminate against anybody that has a “protected characteristic”, including disability. At a glance this sounds amazing, and very forward thinking, but does anyone actually know what is involved in bringing a disability discrimination claim against an institution or person?
It’s a resource heavy, and convoluted process. It may even involve solicitors.
Do disabled people have the spoons, resources, or money to access the laws that are put in place to protect us? How can we expect the average disabled person to navigate these systems, and bear the financial and psychological burden.
If you have a disabled child, you have the Education, Health and Care Plan (EHCP) process. Which in its basic form is supposed to involve a holistic assessment of a child to identify their needs and silo them into four broad areas of special educational needs.
Sounds simple, right?
For any parent who has been through this deeply traumatic process (because that’s what it is), it does not do ‘what it says on the tin’. It is again a resource heavy and convoluted legal process that may even put you on the radar of social care, and a victim of institutionlised parent carer blame (IPCB) (Clements. L, and Aiello, L. 2021).
These are just two examples of the many processes that barricade Autistic people and their families out of equitable and fair treatment. They never come one at a time…
So, what is clustered injustice, and why do we need to know about it?
Cluster definition
“a group of similar things that are close together, sometimes surrounding something.”
Cambridge Dictionary
Injustice definition
“the condition of being unfair and lacking justice, or an action that is unfair.”
Cambridge Dictionary
Given these definitions, clustered injustice, put simply, refers to legal problems that are encountered by disadvantaged people, whereby the issues are often not singular but ‘clustered’.
While it refers to legal proceedings, it can also be experienced by Autistic people when navigating law, policy, process, and procedure, etc.
Hypothetical case study
Fabricated and Induced Illness (FII) guidance can lead to clustered injustice (Gray-Hammond, D and Adkin, A. 2022). For example, a mother may be seen to be making “frequent and vexatious complaints” (Royal College of Paedatrics and Child Health, 2021) while trying to have their child formally recognised as Autistic, and subsequently access appropriate support. In this case, the mother has greater knowledge of their child than the professionals, but is subjected to IPCB by being accused of FII.
The diagnostic process for a child is a multi-disciplinary approach that spans education, health and social care. Depending on the age of the child, mental health services may also be involved. It’s done this way so that professionals are able to gain a holistic view of the child, and accurately assess them. However, we know that services are woefully underfunded and basic knowledge about Autistic experience is sparse, stereotypical, and loaded with pathologising rhetoric (Dillenburger et al, 2016).
Lets say the professionals get it wrong, lets say the child has an ‘atypical’ presentation (which basically means the assessing professionals do not have sufficient knowledge of Autistic experience in order to be assessing the child). Consider that you have to point this out in the form of a complaint. You are potentially complaining to, health, social care, and education, maybe even different departments in each of those areas. This means that in order for a parent to have their complaint holistically considered they have to complain to separate departments, following separate processes which could easily be considered vexatious and frequent, when in fact there is no other holistic solution available to them.
This is clustered injustice.
Autistic people have similar experiences with accessing disability benefits, healthcare, the justice system, and many more areas of life. Institutions and policy are designed in such a way that the holistic nature of the barriers we face are fragmented, siloed, compartmentalised, and ultimately minimised. At worst it is then used as a tool to further exacerbate an already existing power imbalance. Clustered injustice is a weapon, used by those in power against disadvantaged groups.
What is minority stress and how does it relate to clustered injustice?
Minority stress refers to the unique stressors that are experienced by minority groups as a result of their segregation from society at large by stigmatisation and discrimination.
“Researchers hypothesize that decreased social standing leads to stigmatized minority groups’ being exposed to more stressful life situations, with simultaneously fewer resources to cope with these events. Social structure facilitates this process through acts of discrimination and social exclusion, which are added stress burdens that socially advantaged groups are not equally exposed to.”
Botha, M., & Frost, D. M. (2020)
It is simple then to see that there is a direct and causative relationship between clustered injustice and minority stress.
What can be done to mitigate this?
Unfortunately, not a lot at this time. However, community connectedness does relieve the effects of minority stress in Autistic people (Botha, M. 2020). In short, the collaborative problem solving that can arise from finding your community and sharing the psychological burden with those that understand, and sharing resources and the experience of those that have come before you is invaluable.
As it turns out, we’re not anti-social loners after all!
If you see this or experience it, call it what it is. The more people that have a name for it, and actively speak out against it, the more awareness there will be of this particular form of injustice. This oppressive system relies on us not being able to articulate or describe the barriers that we face, the onus is put on us as Autistic people, to identify our needs and advocate for them. So now you have one more tool in your self-advocacy toolbox.
Knowledge is power.
Bibliography
Botha, M. (2020) Autistic community connectedness as a buffer against the effects of minority stress. Diss. University of Surrey.
Botha, M., and Frost, D. M. (2020). Extending the minority stress model to understand mental health problems experienced by the autistic population. Society and mental health, 10(1), 20-34.
Clements, L. (2020). Clustered Injustice and the Level Green
Dillenburger, K., McKerr, L., Jordan, J. A., & Keenan, M. (2016). Staff training in autism: The one-eyed wo/man…. International Journal of Environmental Research and Public Health, 13(7), 716.
Equality Act (2010).
Gray-Hammond, D and Adkin, T (2022) Creating Autistic Suffering: Fabricated or Induced Illness, state sanctioned bullying. emergentdivergence.com
This article was co-authored by David Gray-Hammond and Tanya Adkin
Trigger Warning:This article contains strong language and discussions of fabricated or induced illness, ableism, discrimination, bigotry, child abuse, medical abuse, systemic abuse, institutionalised bullying.
Fabricated or Induced Illness (FII) is defined by a set of “alerting signs”, written in guidance produced by the Royal College of Paediatrics. From the horses mouth itself-
“FII is a clinical situation in which a child is, or is very likely to be, harmed due to parent(s) behaviour and action, carried out in order to convince doctors that the child’s state of physical and/or mental health and neurodevelopment is impaired (or more impaired than is actually the case). FII results in physical and emotional abuse and neglect, as a result of parental actions, behaviours or beliefs and from doctors’ responses to these. The parent does not necessarily intend to deceive, and their motivations may not be initially evident.”
RCPCH Guidance, 2009 (updated 2021)
Parent blame and insinuations of FII are becoming common place, and this is where it gets interesting. Let’s talk about what isn’t FII. It isn’t Munchausen’s Syndrome by Proxy, and it isn’t Factitious Disorder Imposed Upon Another (actual mental health diagnoses). It isn’t a diagnosis, there is no diagnostic criteria, it doesn’t appear in any diagnostic manual; in fact there is no evidence to support the need for FII to even exist as a form of child abuse. Yet as advocates and professionals working with neurodivergent children and their families, this is a daily occurrence for us.
FII was created by the Royal College of Paediatrics. There own guidance states that-
Literature in this field recognises that there is a gap within the existing evidence-base surrounding the incidence and prevalence of PP [Perplexing Presentations] and FII. We acknowledge that there is a lack of data in this field, in particular for perplexing presentations, and the exact incidence and prevalence is therefore unknown.
RCPCH guidance, 2009 (Updated 2021)
This exists despite the fact that in the past eight years, there have been no deaths involving children where FII is even mentioned, except for two cases, one by heart failure (from a pre-existing condition) and one by suicide (Bilson, 2021), it’s probably a fair assumption to say that it was likely caused by a failure to accommodate the child’s needs. Had professionals spent their time investigating these children’s needs as opposed using parent blame as a way to alleviate them from their duty of care, these children may very well be alive today.
What are professionals looking for when they suspect FII?
Not all of the “alerting signs” are relevant to Autistic children, but in particular the following are quite concerning-
In the child
• Reported physical, psychological or behavioural symptoms and signs not observed independently in their reported context
• Unexplained impairment of child’s daily life, including school attendance, aids, social isolation.
RCPCH Guidance, 2009 (updated 2021)
In the parent
• Parents’ insistence on continued investigations instead of focusing on symptom alleviation when reported symptoms and signs not explained by any known medical condition in the child.
• Inappropriately seeking multiple medical opinions.
• Child repeatedly not brought to some appointments, often due to cancellations.
• Not able to accept reassurance or recommended management, and insistence on more, clinically unwarranted, investigations, referrals, continuation of, or new treatments (sometimes based on internet searches).
Not letting the child be seen on their own
• Talking for the child / child repeatedly referring or deferring to the parent.
RCPCH, 2009 (updated 2021)
If you know anything about the Autistic experience, you will know exactly why the above specifically targets Autistic children and their parents (who are often Autistic themselves). Where does this consider masking? Where is the consideration for situational mutism, Autistic burnout, extreme anxiety (often experienced by Autistic children). This is not withstanding the fact that most “professionals” have not even heard of Autistic burnout let alone have more than a generic and stereotypical understanding of Autistic people that is based on outdated and largely debunked theories.
It gets worse.
The next instalment in this shitshow of a pamphlet (that is directly responsible for the removal of scores of children from their families, and the untold trauma that comes with such things), sounds like it was directly quoted from a right-wing news channel-
Parents who struggle with the management of their child may seek an inappropriate mental health diagnostic justification in the child such as Attention Deficit Hyperactivity Disorder (ADHD) or Autism Spectrum Disorder (ASD).
Material gain includes financial support for care of the child, improved housing, holidays, assisted mobility and preferential car parking.
RCPCH guidance, 2009 (updated 2021)
I bet these were the type of people who were having wine and cheese parties by accident in the middle of a pandemic.
Now, we’re not going to waste our spoons on explaining why this is utter ableist, classist, racist horseshit (really all the forms of bigotry you can think of). What we will say, is that for anyone who has filled in a DLA form, submitted the plethora of evidence needed to justify a childs disability, for what is effectively a small amount of pocket money compared to the actual cost of caring for a disabled child. Preferential parking and preferred housing? Clearly these people are so far removed from any semblance of qualification to discuss or have any impact on the lives of neurodivergent people, or disabled people in general, that they buy into the propaganda peddled that disadvantaged people are trying to steal resources.
Back to our broader discussion.
Here’s another golden nugget of guidance-
“The second motivation is based on the parent’s erroneous beliefs, extreme concern and anxiety about their child’s health (eg nutrition, allergies, treatments). This can include a mistaken belief that their child needs additional support at school and an Education Health and Care Plan (EHCP).”
RCPCH guidance, 2009 (updated 2021)
Big issue with this one. Schools are effectively financially penalised for seeking further SEN support for children. It’s common place for schools to have to fund the first £6000 of an EHCP. £6000 that doesn’t actually exist. Not withstanding the fact that school teachers are not qualified to decide whether or not a child is “fine in school”. If this was the case, why do we even require needs assessments in the first place?
Then there is the level of paperwork that is required to support a child with significant SEN, and the staff hours that takes. All of this results in schools routinely downplaying children’s needs and presentations, not knowing what they are looking for, and assuming that if little Johnny isn’t smashing up the classroom, he must be fine and there are no needs to meet.
Medical professionals are relying on these reports of “fine in school” from underqualified mainstream education professionals to then decide that it must be FII, that the parents are making it up… and the cycle continues.
So, the pièce de résistance in this spectacle-
“Autism Spectrum Disorder (ASD) in the parent may underpin fixed beliefs about the child’s ill-health.”
RCPCH guidance, 2009 (update 2021)
So there you have it people, if you are Autistic, if you seek an EHCP, if you seek specialist advice (because the NHS is woefully underfunded, and uneducated on Autistic experience), if your child masks, if you seek a private diagnosis, if you challenge professionals, if your child is situationally mute, and (finally) if you are poor. You are ticking a lot of boxes as a child abuser; as profiled by the RCPCH guidelines on Fabricated or Induced Illness.
How does this contribute to institutionalised parent/carer blame?
Institutionalised parent/carer blame was researched by Professor of Law, Luke Clements (2021). The following is a quote regarding the research report.
“I am very concerned to hear of the continued problems with the way many Children’s Services Departments in England are treating parents caring for disabled children: a problem that was highlighted in a Disability Law Service report last year. The current report points to defective Department for Education guidance as a root cause of this problem, which is leading to parents being blamed when they ask for care for their disabled children, instead of receiving the help and support they deserve. I call upon the Education Secretary to address this issue as a matter of urgency.”
Rt. Hon. Sir Edward Davey, MP, Patron of the Disability Law Service, 2021
The reports key messages were as follows-
“National and local social care policies in England create a default position for those assessing disabled children, that assumes parental failings. This approach locates the problems associated with a child’s impairment in the family.
The national guidance that directs the process by which disabled children are assessed by English Children’s Services Departments (‘Working Together 2018’) is not fit for purpose and arguably unlawful. Its focus is on safeguarding children from parental neglect / abuse and it fails to address the distinct assessment and support needs of disabled children for whom there is no evidence of neglect or abuse.
Unlike the national guidance concerning the assessment of disabled adults, ‘Working Together 2018’ contains no requirement that those assessing the needs of disabled children have any disability related expertise, skills or experience.”
Luke Clements, 2021
We can then see how the rhetoric of parent/carer blame is perpetuated. We have education, health, and social care, working symbiotically to impart accusations of FII onto parents and carers of disabled children, absolving themselves of responsibility for that child’s wellbeing.
If we were cynical, we could comment on how this has been beautifully engineered for one sole purpose; TO SAVE MONEY. If there are no needs identified, then there is no responsibility for education, health, or social care to meet those needs.
If we intimidate and gaslight parents and carers enough, they may well stop advocating for their child’s needs. Is this the social care equivalent of off-rolling? Where schools and local authorities threaten parents with social care referrals and fines if their child does not attend school, or offer them the alternative of home education, absolving them of any legal (and financial) obligations for the child’s education.
All of the above heavily contributes to Autistic suffering by using these convoluted systems to deny access to much needed support and accommodations. It’s an inside joke amongst Autistic parents and carers that they are waiting for a FII referral.
“One whiff of neuro- and they’ll have you for FII”
It’s all based in the ableist assumption that Autistic people are incompetent and incapable child-abusers. Maybe the commonly held (and debunked) theory that we don’t have empathy contributes to this?
Seeking support for your disabled child has effectively been criminalised.
What can be done about it?
Here’s the tricky part, because these accusations, and infringements on private family life grind us down. Really the only thing that we can do about it is to tick every box that’s listed as an “alerting sign”.
Request an education, health, and care needs assessment from your local authority.
Be prepared to appeal every unlawful decision.
Seek professional advocacy.
Keep all communication in written format.
Keep everything as evidence.
Get very good at filing, very quick.
If you are able to access private specialist assessment, do it.
If you are being accused of FII, consider commissioning an independent social care assessment.
Expect parent/carer blame.
Do not take it personally.
Do not give up.
We realise there is cost involved in the above advice, and it’s not cheap. Unfortunately, it’s just another fine example of how policies and systems are designed to penalise poor and disabled people. There are a few things you can do if you are on a low income though.
Learn as much as you can! The fight for your children’s right’s and your own never goes away, the sad fact is you will always be battling to get what your child needs and is legally entitled to, you just get better at it and it becomes less overwhelming over time.
Evidence– You can submit subject access requests to schools, local authorities, doctors etc. This should give you evidence of your child’s difficulties and what has been done to meet their needs.
Legal Aid – If you are a low-income family, you may be able to access legal help to appeal local authority decisions regarding EHCP’s. Legal help will also fund independent reports, usually Educational Psychology, Speech and Language and Occupational Therapy, I have known them fund independent Social Care reports before however it is not common place and you will have to put together a good argument as to why it is necessary from the perspective of an EHCP. You can access legal aid information here.
Make use of free resources – IPSEA have a range of templates for all things EHCP related and a free helpline although, it can be difficult to secure a spot. Look for free Q&A’s on Facebook. Scour the files section of face book groups.
Finally, access the Autistic community online, many of us have been down this well-trodden path before and can give some really sound advice. Many of us are professionals working within this field.
It’s not always called FII, mostly it is implied rather than explicitly said. The default position is always that there is a fault with the parent/carer. Especially if you are Autistic.
Bibliography
Bilson, A. (2021) Education Magazine – Episode 6 – Fabricated or Induced Illness. Sinclaires Law. YouTube.
Clements, L (2021) Institutionalising parent/carer blame. Cerebra.
Davey, E (2021) Institutionalising parent/carer blame. Cerebra.
RCPCH guidance (2009; Updated 2021) Perplexing Presentations (PP) / Fabricated or Induced Illness (FII) in Children. RCPCH. https://childprotection.rcpch.ac.uk
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