In the Autistic community, a common term we hear is “Autistic advocate”. The popular definition is a person using their lived experience to further the cause of Autistic rights and the wider neurodiversity movement. Despite this however, advocacy is a complicated and important role.
As an independent advocate, I utilise various different models of advocacy depending on what I am doing. The most common model, and the one that you will often see online through social media is community advocacy. Community advocacy requires us to work to represent the views and wishes of a wider community of people. A good example of this kind of advocacy is the Spectrum 10k campaign.
Members of the Boycott Spectrum 10k campaign engaged in community advocacy when writing the joint statement that was sent to the Health Research Authority. Community advocacy can often blend in with activism based approaches to enable wider change for an entire community of people.
There is also peer advocacy. This is the model of advocacy I use most commonly. This usually involves working with individuals as a member of their own peer group to represent their wishes, needs, and fight for the accommodations they require. This is an important type of advocacy for Autistic people who so often have to work with professionals who do not have lived experience that allows them to empathise fully with their clients.
Perhaps the most complicated but vital form of advocacy used in the UK is statutory advocacy. Two particularly relevant types of statutory advocates are Independent Mental Health Advocates (IMHA) and Independent Mental Capacity Advocates (IMCA). IMHAs work to ensure a person’s rights are fulfilled under the Mental Health Act (1983), while an IMCA fulfils the same role with regards to the Mental Capacity Act (2005).
These roles are important because they ensure that a person is not needlessly detained or deprived of their liberty.
There are many misconceptions about advocacy, but the biggest one is that as advocates, we speak on behalf of people. Advocacy built upon being another person’s voice is fundamentally flawed. As advocates, we should be empowering a person to communicate their views and wishes themselves, in whatever form of communication works best for them.
Another role for an advocate (particularly within the Autistic community) is to help contextualise a person’s experiences. When a person is having negative experiences, we can use our experience as an advocate to help them understand why that has happened and what they can do about it. In the Autistic community, much of our community advocacy is based on helping people understand their Autistic experiences in order to help them better advocate for themselves.
The ultimate goal of advocacy is to become redundant. Effective advocacy should empower its recipients to be able to advocate for themselves. So, while it may sound strange, our ultimate goal should be to not be needed.
Whatever form your advocacy takes, it is important to engage in reflective practice, and remember it is not your job to save people. An advocates role is to empower people to fight their own battles. Nothing will burn an advocate out quicker than joining the dysregulation of the people they are trying to help. We need to be the calm in what is often a tense situation.
Advocacy is an intense experience, but it is so very worth it. I look forward to seeing how the Autistic community’s advocacy circles evolve in the future and look to continue to evolve my own advocacy as ideas within the community shift and change.
Many of us as community advocates have dedicated our lives to defending the marginalised and uplifting those that society has tried to hold down. For some of us, this has become our professional job. For others, it is something done on a voluntary basis. Both are as valid as each other. We spend enormous effort on our cause, but in truth, we rarely make space for ourselves. To put it another way; who advocates for the advocates?
Autistic people engaging in community advocacy and activism are just as disabled as the rest of our community. We are not some mythical entities that exist outside of the reality of Autistic experience. We are victimised, we are oppressed, we are invalidated. Many of us have very public facing profiles, and sometimes people forget our right to privacy. It can be exhausting. We have to fight not just for our community but also police ourselves. People online tend to expect perfection. Ironic, given that neurodivesity is almost explicit in its denial of perfection.
Beyond the pressures of being in the public eye, there is the reality of facing the trauma that our community experiences. Many of us fight daily on an individual and community level against the abuse of our community. My first thought, of course, is the Spectrum 10k campaign. Myself and the rest of the Boycott team have shed literal tears trying to hold ourselves together and fight. Another example is the Creating Autistic Suffering series that I co-author with Tanya Adkin. The content of those articles is not hypothetical. It is based on things we have witnessed in our professional roles.
Time and again, we face some of the worst that society gives to neurodivergent people.
I do this work because I love the Autistic community, and I live my work; but I am a human being. There are times when I want to scream and cry and pack it all in. There are times when I feel like an imposter. There are times when I wonder how sustainable it is to get up each day wondering what ableist vitriol I will witness today. I love my work, but it can be draining in a way that can’t be described by any metric I am aware of.
So, why write this? No, not because I can’t cope with it. This work is my calling, and despite the negatives, I wake each day knowing that today, I have the power to make a positive difference for someone. I write this because I want all Autistic advocates (regardless of the nature of that advocacy) to know that I see them. I see you standing up and fighting each and every day. I see you do your best to make sure that the world we leave behind is better than the one we were born into.
Each of us has the power to make change for the better. Our mere existence alters the world in irreversible ways. However, I want advocates everywhere to know that it’s okay to stand back and recuperate.
The reason a choir can sing impossibly long notes is because individual members can breathe while the rest keep singing. In case no one has told you recently; take a breath, the rest of us can hold the note for you.
The mental health act of 1983 (updated 2007) is legislation in England and Wales that puts into law the individuals rights regarding mental health treatment. In particular, it talks about the individuals rights with regard to inpatient treatment. This is an issue of significance to the Autistic community.
Patients in an inpatient setting can be either formal (detained under the mental health act) or informal (they are inpatients volutarily). For the purposes of this article, we will look at the sections that can be used to detain an individual against their will, and what their rights are with regards to their use.
This pertains to the removal of an individual from a public space, to a place of safety, for assessment. This is carried out by police. Under this section you can be held for assessment for up to 36 hours.
This section allows police to enter a private place (not public) to detain you for assessment. To do this, they must have permission from magistrate. Again, you can be detained for up to 36 hours.
Under this section, you can be detained for up to 28 days in a psychiatric facility for assessment and treatment. People held under this section can be treated against their will. It is unusual for a section 2 to be renewed.
This section can be renewed.
Initially you can be detained for 6 months, it can then be renewed for a further 6 months. After this period subsequent renewals allow for 12 months of detainment. This section should only be used for yourself and others safety, and where treatment cannot be provided as an outpatient.
Section 5(2)“Doctors Holding Power”
This section allows a doctor or other approved clinician to detain you for up to 72 hours. This section requires a report to be made to the hospital manager. You are most likely to come across this as a voluntary patient.
Section 5(4) “Nurses Holding Power”
This regards detainment by a specially qualified nurse. You can be held for up to 6 hours, or until a doctor or clinician with the power to detain you arrives, whichever is earlier.
Section 117 aftercare
This section describes the legal duty to provide aftercare for those discharged under sections 3, 37, 45A, 47, and 48. this also applies if you are under a Community Treatment Order (CTO).
Community Treatment Orders
This is similar to being “on licence” from incarceration. A CTO allows you to be treated in the community under certain conditions. If you break the conditions of your CTO, you can be recalled to hospital.
This is not exhaustive, the mental health act contains a great many sections, but these are the ones you are most likely to encounter standardly.
If detained under section, you are legally entitled to an Independent Mental Health Advocate (IMHA) and a Second Opinion Approved Doctor (SOAD). You also have the right to go to tribunal and ask that your section be ended.
Today I am 6 years sober from addiction. During those six years I have learnt many lessons, but in this reflection I would like to consider something that has played on my mind for the past three years of my advocacy work.
While not overtly a bad thing, it is often misused to infantilise and minimise the achievements of disabled people while hiding behind a mask of feigned respect. This phenomenon is known as “inspiration porn”.
A good (hypothetical) example of such a thing would be a video of a disabled person doing something completely mundane, like dancing, but they would be dancing with a non-disabled person. The video would centre the non-disabled as some kind of saviour to the disabled person for doing something as basic as treating them like a human being. The implication of the video, albeit in subtext, would be “Look at the amazing things that disabled people can achieve when an abled person rescues them from their shameful existence”.
It’s dehumanising and wrong.
So, addiction advocacy.
As a recovering addict in the public eye, I do what I do because I want to help others overcome similar challenges to my own, and help reduce their suffering. This does in fact require inspiring people. If it weren’t for the sober addict who showed me kindness during my first stretch on a psychiatric ward, I might not have chosen recovery.
The fact that they had turned their life around, and become someone I wanted to look up to was inspiring, and that isn’t a bad thing.
What would be bad would be if people like myself are allowed to become another source of inspiration porn. It’s a difficult line to walk. I want people to have what I have found, not get off on the tragedies that have formed who I am.
Contrary to popular belief, addicts are people. We are not burdens, we don’t deserve our suffering. Regardless of whether or not we are in recovery, we deserve food, housing, health care, support, and kindness.
This is what I want to inspire in people.
So please, don’t look at me and think it’s a miracle that I recovered. My recovery shouldn’t be the inspiration. I was privileged to have a loving and supportive set of family and friends. I had good key workers (although the services they came from were woefully ill-equipped). I was in a place where I was ready to enter recovery.
What I want to inspire in you is the idea that all addicts deserve recovery. I want to inspire you to challenge the systems that keep people like me trapped in a world of suffering.
I want you to know that those with less privilege than myself need us to get in the trenches and help them fight this war.
If that is what I inspire in people, then I am happy with what I am doing. If, however, you look at me and see a walking miracle, then I have not gone far enough.
The tragedies and traumas of my life should not be celebrated. They should be wielded as weapons to dismantle the masters house, and rebuild it into something where we can all coexist and thrive.
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.
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.
Recently I have found myself considering the direction that my advocacy is taking. I have found myself reading extensively on “autism theory” and, on the other hand, writings by actually Autistic authors.
At first I felt broken by what I had realised. Our world is built on a paradigm that by design oppresses anyone outside of it’s cultural standards of normal. What can we do about such a hate filled world? How can a minority group take on a system that is set up to silence them?
The answer is the opposite of hate. Which some might call love, but I find that utterly reductive and terribly clichéd. So if love is what drives us to stand up for another, then advocacy is the tool that we use to do so.
Where the hateful and oppressive masses sit in silent glee as all that is not “normal” is destroyed and hidden away, a self-advocating culture amplifies the voices of those who may otherwise go unheard.
Some people think that the job of an advocate is to give the oppressed a voice, but this is not true. An advocates job is to listen, and communicate what they hear in a way that can no longer be ignored.
Advocacy isn’t always about representing another person. Often as advocates we have to sit with ourselves and listen to our own inner voice. What helps us? How did we unlearn that? An advocate must be able to reflect on their own experience, and how that impacts the people they are standing up for.
The most radical thing an advocate can do, however, is to unlearn the systemic lies that society has drilled into us since birth. As Autistic advocates, the greatest lie we have been raised with is that society has a standard that we must adhere to.
There is no standard, there is no normal. This is a mistruth used to keep us static. Our society desperately wants our silence, so it fools us into thinking that we diverge from “normal”, when the truth is that what we truly diverge from is the dogma of a world that craves our indifference.
From a young age we are taught that our difference makes us broken, a shameful secret to be remedied or hidden from sight. An advocate must stand tall in the knowledge that our diversity is what makes us beautiful.
That, is what can combat a hate filled world. Not love, but advocacy that guides the world into seeing the beauty in our differences, instead of trying to eradicate them.