Autism Spectrum Conditions and Self-Diagnosis

There is much debate over the validity of a ‘self-diagnosis’ for neurodivergent people. This site fully supports the right for people to self-diagnose and find a sense of self within our “community”. The reality of the case is that the vast majority of people seek a formal diagnosis precisely because they think they may diverge from neurotypicality. I know I did. I was on the receiving end of 3 different incorrect diagnoses before I was given my clinical accusation of autism. One of them was Borderline Personality Disorder, and I knew this wasn’t me so I challenged it. The Psychiatrist smugly held up a piece of paper and pointed out that many people with BPD challenge the diagnosis, so I had proved his opinion correct. I’m not sure he had heard language like mine in his consultation room before but he stuck to his decision.

I then spent hours, days, years reading articles, books, blogs… well anything and everything related to mental health and cognitive difference. Then I discovered this thing called Asperger’s syndrome. It fitted. I self-diagnosed, but knew this was correct well before I met with the Clinical Psychologist for confirmation. She agreed. I had finally found out which banner I should march behind – if I ever plucked up the courage to do that sort of thing! I read a post this week from a Clinical Psychologist who said he had never met anybody who self-diagnosed who wasn’t correct in their conclusion.

Let’s keep in mind that there could be any number of reasons why a person doesn’t get a formal diagnosis; I tried through the NHS via my GP but was told that as I was an adult – and a ‘high functioning’ one (their words) then the priority for funding would go to children. I get that on many levels, but won’t pretend that I wasn’t furious at the time! What about me? What about the challenges I faced? I was lucky enough to have a credit card that I could max out and go private. I still resent this now, all these years later.

Because society doesn’t value disabled people, we are often left struggling on our own. Alone. To access support, we have to prove our disability… on a daily basis. We have to prove we ‘deserve’ funding and it will remain this way whilst we remain under the grip of neoliberalism and capitalism. We will never be ‘insiders’ within this system, so what would possibly be gained from self-identification as autistic? You won’t be able to access support in workplace or society, but if you have been through the distress and trauma of not knowing who you are and your place in the world, then you will understand it. If you can find a ‘name’ for why you don’t fit, then you seize it and embrace it. You are pretty much sure to be correct.

Maybe the person doesn’t feel the need to seek a formal diagnosis, maybe they are too afraid of the stigma and negativity that come with it. They may still feel the need to reach out to others like themselves; I know I did! This is the joy of the connected world we live in, it is easier than ever before to reach out and find a friendly contact. If you are self-diagnosed then please do reach out.

There are some elitist sites who deny access or recognition to people without a formal diagnosis, yet rail at the arbitrary nature of clinical psychology and the vagaries of their stereotyped opinions of who and what we are based on our behaviour. Double standards abound in the online autism world. Ignore their ignorance, I’m sure they have their reasons, but they are undoubtedly flawed.

If you do self-diagnose as being neurodivergent, then you are very welcome here. We probably have a lot in common…or not…but that’s OK too.

Studio 3 Low Arousal Training

Go to for full details

Foundation and Advanced Low Arousal training sessions are now being delivered online every Friday by our team of experienced crisis management trainers. These 3.5 hour sessions cover the principles of Low Arousal Approaches and their application in practice, applicable for families, teachers, staff and more. The foundation course also includes a free e-copy of ‘The Reflective Journey’ by Professor Andrew McDonnell.

Excellent training and really well delivered. Fully recommend.

Restraint Reduction Network

Join the Network

We are the world leading restraint reduction charity and we want you to be a part of our movement. All of our members demonstrate their commitment to reducing restrictive practice and has a vital role to play in shaping a global, least-restrictive culture.

We have launched a new model of membership to support everyone on their restraint reduction journey. Joining the network is completely free and you can join as an individual, as an organisation, or both.

We understand that reducing restrictive practices is a challenging journey for individuals and organisations to undertake alone. We want to bring everyone together to help one another make a huge difference.

See our Charter for Change here.

Why you should join us

Organisations: If you join us as an organisation, all your employees will be able to access Restraint Reduction Network conferences and events at a discounted price, giving them the opportunity to learn from sector leaders and network with their peers. You will also receive regular updates from the Restraint Reduction Network with the latest sector news, guidance, resources and materials, which you will be able to share throughout your organisation to further equip your staff. Finally, you will also gain exclusive access to the Restraint Reduction Network member logo, which you will be able to use on your organisation’s website and email footers to demonstrate your commitment to reducing restrictive practices.

Individuals: If you join us as an individual, you are demonstrating your commitment to reducing the use of restrictive practice. Even if your organisation is a member of the Restraint Reduction Network, we would encourage you to also join as an individual, as this will give you access to more benefits. As well as member discounts on events and conferences and updates, individual members can also access exclusive resources and learning materials. There is an online community of practice where you will also be able to connect with, and share ideas and practice with, others across different sectors.

Who is it for?

We want to work with everyone who supports people who are vulnerable to restrictive practices, including people with mental health conditions, learning disabilities, autistic people and people living with Dementia. This includes people with lived experience, family members, carers, academics, and professionals working across education, health, social care and forensic settings.

My Pledge:

Through my training and part time lecturing, I will continue to advocate for the elimination of all restrictive practices where possible in all settings for autistic children and adults. Proactive and low arousal support can be used instead if the person is accepted for who they are and not their actions. I will continue to challenge anybody, irrespective of their role or rank, where I see abusive, unnecessarily restrictive or disrespectful support.

My measure of success:

The growth of success of The Critical Autism Studies Undergraduate and Masters Course I contribute to as an expert by experience.

Seeing the staff go into their respective roles and implementing the ideas and approaches we have taught them.

Fewer occasions of having to challenge poor and abusive practice.

Seeing neurodivergent people take back the narrative about our identity and any subsequent support needs.

Allow Processing Time

Where is your question in all of this sensory overload?

This is the lived reality for many people. The competing sensory input can be overwhelming, so allow the person a bit longer to process a question or a reply. Try and keep in mind the environment if you want to discuss something important, then are you helping or making the situation worse? Just because you don’t hear something doesn’t mean the other person can’t.

Sensory Matters

We traditionally talk about 5 senses, but the reality is that there are other senses that can negatively impact on autistic people as well as the traditional ones. Above you can see the list and it is important to keep in mind that people can struggle with all of them. This can be in the form of Hyper sensitivity i.e. things being too bright and being so bright that it can cuase headaches or migraines. Or it can be in the form of Hypo sensitivity i.e. the person doesn’t feel as much from the sensation so for example, may not feel cold or feel pain as much as other people. It is estimated that 95% of autistic people face sensory or environmental challenges on a daily basis. This can mean the difference between being able to engage with a community or environment or not actually being able to get out of bed.

Vestibular – This is to do with the person’s sense of balance. If you have an issue with this sense, then it also impact upon your ability to sense where other things or objects are. I regularly walk into the corners of desks or door frames as I don’t judge properly where I am. This is made far worse by cluttered spaces or rooms where there are no real clear pathways through. It adds challenges that can be removed just by thinking about the planning of a room.

Proprioception – Awareness of sensations coming from the body e.g. Muscles, tendons and joints. Some autistic people will unconsciously ‘tap’ their foot whilst sat still, they may not know they are doing it. Another term for this is ‘spatial awareness’ and some people can be described as being like a ‘Bull in a china shop’. This isn’t limited to autistic people, but is often found in autistic people. It is often seen in people who are described as ‘clumsy’ but it must be kept in mind that they can’t help it. People with proprioception issues are not doing things on purpose, they simply cannot help it.   

Interoception – This is related to feelings and senses from inside the body. For most people, if you feel thirsty, then your body sends a message to your brain which translates to an action i.e. “Get a drink”. If you have issues with interoception, then this message might not get through. It is really important if you are supporting somebody with interoception issues, that you keep this in mind. People may need to be reminded to have a drink or something to eat as the sensations of thirst or hunger may not register. Alternatively, other people may not experience the sensation of being ‘full’ so may keep eating until they are sick. It is really challenging and can be distressing for the person, especially if this is centred on the bladder or bowels. For some disabled people, this can be socially challenging especially given the lack of toilet/adult changing facilities available in most cities or venues.

It is important that EVERYBODY keeps this in mind when interacting with autistic people as, you might not mean to, but YOU might actually be the cause of the sensory issues yourself.

Critical Autism Studies

The term ‘Critical Autism Studies’ (CAS) was coined in 2010 by Joyce Davidson and Michael Orsini. Although the definition of CAS is subject to some debate, it is thought to comprise three elements:

1. Critically exploring the power dynamics that shape autism – in terms of diagnosis, what is autism and what is knowable about autism and, in turn, understandings of the autistic experience.

In other words, is autism a disorder or a different way of thinking and experiencing the world? How does this impact on the lives of autistic people?

2. Enabling narratives that challenge the dominant negative medical autism discourses.

Why should the negative and disabling opinion of autism as a disorder or a tragedy? Autistic people and academics have been challenging this approach for years and should be listened to. The contemporary CAS approach to autism states that this outdated and stereotypical view is damaging and always has been.

3. Creating ways of understanding and researching autism that are emancipatory and respect the highly individualised nature of autism.

Autism can be a disability for many autistic people – some needing more complex support than others – but it is mainly society that causes the issues for us. CAS and the neurodiversity movement calls for support for ALL neurodivergent people. It is incorrect to view neurodiversity as simply about “High functioning” autistic people; this use of functioning labels is rejected as lacking understanding of the reality of how autism impacts upon people. Whilst many autistic people are able to participate in neurotypical society, the majority are only able to do this by ‘wearing masks’ and hiding their autism. This is very damaging and has a negative impact on mental health that autistic people with Learning Disabilities don’t face. This is not to minimise the experience of anybody, indeed it is stated to focus on the fact that we should be fighting the societal systems and practices that negatively impact on all autistic people differently and not each other. Support should not be based on our ‘value’ to society but that we are all human beings. This is viewed as ‘aspirational’ by some who see the current harsh political climate we live in, neoliberal/conservative ideology has never been supportive of disability rights, but we can change the focus by listening and respecting autistic people as human beings deserving full human right. We can all do that right now.  

There is some dispute between CAS writers who see autism and, by extension, the autistic experience, as a construction, i.e. our differences are created as being disorders and therefore pathologised and given damaging labels and those who have a more emancipatory agenda. This group want to free autistic people from the shame and stigma of negative opinions of autism by challenging the disproven stereotypes of our ‘impairments’. This is done by education and challenging traditional and outdated viewpoints.  

CAS is critical because it disrupts dominant, largely medical interpretations of autism.

In 2014, Mitzi Waltz stated The ‘criticality’ of CAS comes from investigating power dynamics that operate in Discourses around autism, questioning deficit-based definitions of autism, and being willing to consider the ways in which biology and culture intersect to produce ‘disability’. (Waltz 2014, 1337).

What CAS advocates all have in common however, is a commitment to change the focus of the ‘problems’ faced by autistic people as being our individual issues and accept that most of this is as a result of the world being too loud, too bright, too smelly, too challenging for some and looking to change that instead. Communication is a two-way process.

We need to move from a deficit model to valuing the undoubted but unappreciated skills and abilities of autistic people. We need to develop and evolve from neurobiology to neurodiversity; with autism as the manifestation of the ‘normal’ diversity of the human brain.


Waltz, M. (2008). Autism = Death: The social and medical impact of a catastrophic medical model of autistic spectrum disorders. Journal of Popular Narrative Media, 1(1), 13–24.