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Show up and Speak Out: Social Work and Systemic Action for Neurodivergent People

Social Justice, Social Work and why we need to act now for Neurodivergent people.


A couple of months ago, a debate took place in Westminster (UK parliament) about autism and ADHD. This debate included testimonies and perspectives shared by neurodivergent people with lived experience. Issues around accessibility to work, diagnosis and support were covered, and I applaud and thank those who stepped up to represent our voices.


At the same time, there appeared some concerted effort by several areas of the press to question the validity and worth of, in particular, ADHD with the typical myths and misinformation with an active intent to discredit our advocates in the government arena, and our neurokin more widely.


It felt like a challenge. A provocation. It also felt like a flexing of the powerful arm of the political oppressor; the dominant discourse owners warning us to step down, stay silent, and behave. We had moved into their territory, and they didn’t like it.


Additionally, we have a new review beginning about increasing autism inclusion in the workplace by the Government. At the same time, several local government and NHS trust areas are actively restricting access to assessment and services for Autistic people unless they meet extremely specific criteria; importantly not being openly confronted by the central government. What does that say to us? A representation of blatant ‘more’ and ‘less deserving; categories of neurodivergence in our capitalist society perhaps?


This reflection is about my own experiences of the organisational and institutional systemic oppression that is experienced by many neurodivergent and disabled people. I then consider the role of social work in challenging this oppression.



 

Health


So, I had the final part of my formal ADHD assessment recently. Except I can’t get my full report confirming the verbal outcome that lo and behold, I am ADHD too. I can’t get this report as it's being held to ransom until I pay my final instalment. It’s a private assessment you see.


I have self-identified as ADHD for some time; an emerging aspect of my neurodivergent identity. I didn’t want a formal assessment because I knew, and I didn’t want to go through the trauma I experienced in completing my autism assessment previously. It may have been a long time ago, but the scars still metaphorically bleed with that one. However, I also need support, a reality becoming more apparent the older I am getting. And you cannot access support in most places without a diagnosis. I needed the signature and opinion of someone who was not me, to be believed.


And there was a problem. My local area didn’t have access to an ADHD assessment for adults on the NHS. In a wonderful display of impulsivity, rather than seek an appointment to discuss options including Right to Choose (an assessment access option in England), I went for a company recommended by someone. Then forgot until past the cancellation period. Ah well…..


I am now in a dilemma of working against my moral values (private healthcare) and debt because of an assessment I don’t really want, to move towards the “evidence” required to ensure I get the supports I need. I am in a system where control feels like it is slipping away.

I am fully aware that I have the privilege of even considering a private assessment. Many wouldn’t be able to get that far. Access to diagnosis is known to be inequitable for various marginalised identities including ethnicity, gender, and other social factors such as poverty, geography, and caring responsibilities. Intersect these identities, and a diagnosis can feel impossible.


And why? Because white capitalist supremacy says so. Think of the language used in the past few years on an “epidemic” of autism, suggestions of infection, undesirable, needing to be medically controlled to be managed. Autism is still seen as inferior and unwanted in society unless it can be useful.


 

Welfare


One of the reasons I need further assessments is to challenge the financial gatekeeping of the Department of Work and Pensions. I am in the process of proving my needs are enough to be worth paying out what the criteria say I match. Faceless assessors make decisions based on what is considered worthy of financially supporting. I am stuck in the space between not being disabled enough for money and being too disabled to be considered competent in other areas of my social existence.


And now, another institution is being included in this systemic nightmare – the courts. I have to endure a judicial process of other faceless people who will all talk about me and decide if I do indeed fit their definition of a ‘deserving disabled.’ Many disabled people can recount similar stories of not being believed regarding need and fighting to be able to pay for their own support that other services also won’t offer because whether it is DLA or PIP, or a child’s access to inclusive support (and therefore funding) via an EHCP. The irony is, you can’t access the service because you don’t have that letter of ‘authenticity’.


It’s the assessment loop of doom. Health assessment to get a financial assessment to get support assessment No financial capital, no social capital. It’s oppressive power at its finest.


 

Social care


A recent article from David Gray-Hammond and Tanya Adkin (creating autistic suffering) suggested that there may not be a role for social care in relation to neurodivergence due to the lack of resources and supports available. What’s the point of duty to assess if there is nothing to recommend that is useful, meaningful, or actually there?


They have a point. How many of us social workers have faced the dread of telling a person or family that there is nothing to offer, or the support is limited to a choice of one? The necessity of making a family fit the support in a resource-led world. It's demoralising, it’s insulting and it's wrong.


I’ve written before about the impact of moral injury on social workers and this is amplified when you are a neurodivergent or disabled social worker. Often we are working with the system we too are trying to personally fight. We have to battle not just the process but the internal pessimism that we are doomed to fail before we even start.


Social workers navigate a systemically oppressive ecology where discrimination through social ambivalence dictates who gets what regardless of what the social worker assesses. The neurodivergent person experiences the personal level of not being believed or their experiences minimised through the interpersonal incompetencies of a professional who does not understand and has not experienced the training or support to look through an ND lens in their involvement, assessment, and decision-making.


Social workers for example are not automatically involved in neurodiversity training at any stage of their career. Systemically, social workers, their managers, their directors, or CEO if they work in the third sector will, as a result, also not be trained in neurodiversity. Therefore, it is highly likely the processes and policies within the organisation they are working in, will also be devoid of inclusive ND practices. We are invisible in the system that is meant to respond to us and meet our needs within their remit.


So, we don’t have the support at the individual level, the interpersonal level, and the organisational level. It won’t come as a surprise then to learn that this in effect strengthens the oppressive experience at the institutional level. Organisational rejection reinforces a chain effect of other organisational refusals in a show of institutional solidarity against the marginalised for the benefit of the superior. Health dismissal upholds financial refusal which in turn ensures social care denial.


 

And every time we fail to challenge we perpetuate the oppression.


Organisational cultures are a mix of top-down influence and mechanisms of the membership to survive. We reject the notion that it is our system that is the cause or perpetuating the injustice. So, we deflect, we shift blame, and we defend against the pain and anxiety of unfairness, of hurt. Anger and frustration drift into ambivalence to avoid the reality of contributing to the very structures we came into the profession to fight against. Defensive practice becomes the response, othering becomes the narrative. It's other agencies or professions at fault, or the families we work with.


We have lost so much faith in our own selves and our own profession; we can’t even bring ourselves to strike against the stripping of our professional conditions making the job impossible. Zombified as both oppressor and oppressed.


 

Your Role


But here’s where I differ slightly from Gray-Hammond and Adkin's article.


I DO think there is a role for social work. And it's hiding in plain sight.


If we are the reluctant gatekeepers we can also use our power to open these heavy gates when we can. And we can do it at all systemic levels.


  • We get our own training on autism and neurodiversity. We identify other knowledge resources from social media (there are plenty) and share them with our teams and services.

  • We don’t just stop at training though. We commit to action we can change in our sphere of influence such as changing elements of our individual practice to ensure all assessments are through an ND lens whether that is on that person’s information or not (remember not everyone shares an ND identity or even knows they have one due to a lifetime of oppression) Reading this is a good start but only the start!

  • You may not have the power to magic up resources, but you can own your assessments and recommendations. Challenge up and out. Identify resource gaps and advocate.

Advocacy is a skill and a value ingrained in social work standards so get it embedded in your everyday practice.


Use your voice and your position to illuminate the need. Individual, relational, organisational, community, socio-political – there IS need.


  • Challenge the other agencies or professionals who question that the ND person would be 'fine' if they only put their phone down or that they are faking disability for more money. Just because it’s easier doesn’t make it right. Respect is a core value including respect for yourself.

  • Challenge the wording in reports. Challenge the language in policies and procedures. Model affirming practice and support your ND colleagues in doing so. Group together and find strength in numbers. Resistance is a group task.

Campaign, protest, for goodness sake, put social justice back into social care.


It’s time to show up. Consider this an invite.


I’ve reserved you a space.


Now it’s up to you.

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