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May 17 2022
Creating Autistic Suffering: Clustered injustice compounds minority stress in Autistic experiences

This article was co-authored between David Gray-Hammond and Tanya Adkin

Trigger Warning: Injustice, mental health, systemic oppression, minority stress, fabricated and induced illness, stigma.

“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

Clements. L., & Aiello.,L (2021). Institutionalising parent carer blame. https://cerebra.org.uk/wp-content/uploads/2021/07/Final-Parent-Blame-Report-20-July-21-03.pdf

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

McCreary, D. R. (2009). Cambridge Academic Content Dictionary. Dictionaries: Journal of the Dictionary Society of North America, 30(1). https://dictionary.cambridge.org/dictionary/english/cluster

McCreary, D. R. (2009). Cambridge Academic Content Dictionary. Dictionaries: Journal of the Dictionary Society of North America, 30(1). https://dictionary.cambridge.org/dictionary/english/injustice

David Gray-Hammond 4 Comments
Jan 25 2022
Creating Autistic Suffering: Fabricated or Induced Illness, state sanctioned bullying

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”.

  1. Request an education, health, and care needs assessment from your local authority.
  2. Be prepared to appeal every unlawful decision.
  3. Seek professional advocacy.
  4. Keep all communication in written format.
  5. Keep everything as evidence.
  6. Get very good at filing, very quick.
  7. If you are able to access private specialist assessment, do it.
  8. If you are being accused of FII, consider commissioning an independent social care assessment.
  9. Expect parent/carer blame.
  10. Do not take it personally.
  11. 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

Institutionalising parent carer blame

David Gray-Hammond 9 Comments
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