A question I see asked, and has been asked of me often, is 'how valid is a self-diagnosis'? - especially from employers.
A better question would be 'does someone need a formal autism diagnosis to be entitled to reasonable adjustments'? - the answer is no. As long as the person has persistent (lasting 12 months or longer) difficulties with an every day thing, like communication or mobility - they're likely considered disabled in-line with the Equality Act 2010.
One of the key criteria for an autism diagnosis, is whether the difficulty or difference has been present from birth, and this is a really difficult thing to know with certainty about a person claiming it is so, especially if you consider at what age, and the extent to which, some higher-intelligence autistic people mask, especially in formal settings such as education or employment.
In my experience, some obvious clues that suggest that someone may be a high-masking autistic person, is if someone has a 'patchy' employment history, needs to leave or loses their job often, but seems to have no difficulties securing roles having 'learnt' the 'interview game'. Of course, there are a plethora of other reasons why someone may have a 'patchy' employment history - but a common sense approach is needed here.
Many autistic people self-diagnose because of an overwhelming and daunting 3-5 year, or more, wait for a formal diagnosis, if they can even get a referral for an assessment.
Some autistic people choose to never go through the formal diagnostic process, for fear of not being diagnosed as autistic. There are still some real horror stories out there about diagnostic services and assessments missing autistic people who later go on to be diagnosed with a different service.
It takes a great deal of courage, personal resources and resilience to 'throw' yourself at the mercy of NHS or local authority diagnostic services - courage, personal resources and resilience that many high-functioning autistic people just don't have due to burnout and other factors.
Of course, at the other end of the argument, and in my experience, sometimes a self-diagnosis is a misdiagnosis, and so I feel strongly that there needs to be more done and provided in terms of pre-diagnostic care (presently the recommendation in the autism diagnostic pathway frameworks are to get support from 'peers'), and the obvious immediate need to cut waiting times down to something more humane - so that everyone has access to a formal diagnosis and the process doesn't harm them further.
If we are not formerly recognised and diagnosed, in the much higher numbers that we actually are, then that societal change will never really happen and funding isn't appropriately ring-fenced for services for our community etc.
I also encourage everyone who thinks they may be autistic, and that is able to do so without unacceptable suffering, to pursue a formal assessment in any way that they can.
A diagnosis of autism for high-functioning adults, and children, often combats imposter syndrome and ultimately increases confidence, promoting better wellbeing and mental health. The most supportive thing that employers, who provide healthcare benefits to employees, can do - is to fund a private diagnosis for employees who are self-recognising that they are likely autistic.
So what is to be done when someone is disclosing that they are -self-diagnosed as autistic and asking for reasonable adjustments at work?
- You may have an instant negative reaction to this, I really hope not but I'm just being realistic here, especially if you're an employer and the employee disclosing has been in post for longer than a year, making it through probation etc. with no adjustments. Be prepared to have this reaction and quickly move on with a fully open mind.
- Don't immediately refer the person to occupational health and then do nothing. Another important point I want to make is that, in my professional experience, occasionally an occupational health assessment can do more harm than good, especially if the assessor is running a 'tickbox' exercise where they are only looking for common difficulties associated with being autistic at work and then recommending 'standard' fixes. This happens more than HR professionals might think. I will say that there are some excellent specialist occupational health providers and workplace assessors out there, but I’m reluctant to recommend one because every time I have I’ve then heard from an autistic person who had a less than good experience with a specific assessor from that organisation! Referring to a really good specialist in any case shouldn’t be your first point of action, or if it is, then it shouldn’t hold-up meaningful conversations about what adjustments might be helpful.
- If the person is asking for a specific adjustment(s), and you should also first be asking them what adjustments they think may be helpful, then have a focussed conversation about what difficulty the adjustment overcomes.
- Let them know that you need to know what the difficulty is, not just the adjustment, so that you can also proactively think about whether there may be any other adjustments that might also help.
- Be patient during this conversation and consciously avoid causing anxiety to the person by asking for examples or evidence of this difficulty in work, unless they offer those examples to you. Not all difficulties can be evidenced, for example, a high-masking person may have extreme difficulty with social chit-chat in the office, but be able to meet their deadlines and appear to others 'as though' they are comfortable - however, when they get home from the office they may be completely unable to carry out basic self-care and shut-down or meltdown from the effort.
- Be aware, that in my experience, a great deal of newly disclosing employees, especially if they have had a lot of difficulties in employment to date, may be passionately asserting their rights and conversations may feel strained. They may also not have had meaningful support to explore their condition and fully know how effective a specific, commonly talked about, adjustment might be for them. The point is – they will want to ask for it. Again, I advocate for patience here, and remembering that the person may have been dismissed, in terms of any kind of support they’ve asked for, for a long time. Pick your battles! Even if you think the request won’t likely help the person, it might help someone who is not confident enough to disclose, and it may be something that you should be doing by default to be inclusive for all autistic people. For example, if someone is asking for all team meetings to be hybrid, or for all instructions and tasks to be written, doesn’t that benefit others, even if it doesn’t benefit the person specifically asking?
- Trial adjustments for effectiveness once you have considered them and if you deem them reasonable. Don't continue with non-effective adjustments - this should be obvious - but you will need a strict review timetable and process in place. Adjustments may also become quickly redundant depending on a person's situation.
- Offer to fund a specialist workplace assessment by someone suitably qualified and experienced.
- Offer to fund a private assessment (that meets NICE guidelines).
- Offer to fund adapted and specialist mental health support and therapy (for example see https://neurodivergentpractitioners.org/)
You can read more about the validity of self-diagnosis here: https://www.tandfonline.com/doi/full/10.1080/09515089.2024.2327823#d1e433
