So, you’ve had your adult autism assessment and you’re officially autistic – but what now?
So, you have had your adult autism assessment, and are diagnosed as being autistic. What now?
You may feel liberated, relieved, excited, thankful, validated and may experience any number of positive emotions; it seems that on the whole, most people gaining autism diagnosis in adulthood find it a positive experience.
But, like any life changing emotional event, a range of emotions will probably come into play at some point; an interesting one is anger; perhaps with family members, or The System – so be prepared for some emotions that you didn’t expect!
Telling people about your autism diagnosis
Perhaps one of the first things on your mind will be telling people about your autism diagnosis; those closest to you may well know about your recent investigations into autism, and may have been with you along your journey of lightbulb moments and education into the (sometimes terribly dated and ableist) world of autism research! (Read our blog on ‘What is autism’ HERE).
Undoubtedly, there will be some extended family members and friends that you may be wondering how to explain your autism diagnosis to (if at all!); particularly, it is pertinent that some older friends and family members will not have had the same exposure to information that is available nowadays, and their experiences of autism will be very different, and possibly negative.
Although it’s unlikely to be written down in your report these days (as it is dated, not only because modern clinicians and manuals simply diagnose with the term ‘Autism’, but also because of Hans Asperger’s Nazi connections), the term ‘Asperger Syndrome’ may be mentioned verbally. (You may find that other people still like and use the term ‘Aspie’.)
You may wonder how to describe yourself – high functioning autistic person? (Please don’t. ‘High functioning’ is now a dated and somewhat undesirable term within the neurodiversity community). Person with autism? Autistic person? Aspie? Autist? The list goes on and the issue of ‘labelling’ is an interesting one, and will be personal to you. (Read more about autistic labelling HERE).
Non-insightful & helpful comments concerning autism
You might find it difficult trying to explain your autism diagnosis to others, and it’s quite likely that along your imminent journey, people will say things to you that aren’t deemed insightful or helpful: For example: ‘But you don’t look autistic!’ Well, it must be very mild.’ ‘Don’t worry, it doesn’t change you as a person.’ (It does). ‘But you look us in the eye, how can you be autistic?’ (Read our take on the latter subject HERE).
Some people you tell will probably draw to mind some friend or family member that they believe to be autistic, and will regale you with ‘positive’ stories about their bravery against adversity, and how they sometimes, almost occasionally, now and then at least, appear to be something close to normal!! Hopefully you can educate these people about modern concepts about neurodiversity. See our article below –
In any case, when to tell people about your autism is very much down to you, now you’re going about your everyday life with a new diagnosis.
An autism diagnosis – your biggest milestone
This autism diagnosis is probably one of the single most significant things that has happened to you to date; and yes, people including yourself go through illness, parenthood, tragedy and all manner of Big Life Experiences; and surely this is small fry, compared to these big life milestones?
Well actually, an autism diagnosis for an adult is potentially ‘bigger’ than just about everything else, for the simple reason that it is the frame or filter from which you look at all of these experiences and milestones; it is your window on the world – the thing that defines how you react to everything around you – and almost everyone will underestimate how big this milestone is for you.
Many people close to you will undoubtedly feel happy that you have your diagnosis, as it gives you some kind of closure, or clarity or affirmation; but it is unlikely that they will realise how life changing it will be for you; and that is okay. It’s your journey.
A new perspective
You may not have anticipated that for many newly diagnosed autists, the diagnosis gives them a new perspective on the people around them, e.g. their workmates, friends and family members – and there is a good chance that this new perspective allows you to see more clearly just how people feel about you.
If you are used to masking (putting on a more neurotypical ‘face’ or persona to get you through life’s daily social situations), you may find that you are less comfortable with this masking after your diagnosis; this is because you probably weren’t doing it consciously for a lot of the time. And if you are now more comfortable in yourself and with showing the ‘real you’, you may notice that some of the people in your ‘life’ circle do not have your best interests at heart; and this may result in some social or familial ‘culling’, as you become more perceptive of the people around you, and their intentions.
At the same time, you may possibly notice with a renewed clarity the people that matter the most to you; the ones that respect you, like you for who you are, understand your quirks and are interested in your life and are respectful of you; and these are the people that surely count.
Your new Aspie-dar
An important and fun element of your new autism diagnosis is the ‘Aspie-dar’ that comes with it, as you will have been researching autism neurologies ahead of your diagnosis, and your knowledge-base is perhaps now pretty impressive. You will undoubtedly (due to the prevalence of a genetic autism link) have noticed that some people in your family (close or extended) also have autistic traits; you will apply this new aspie superpower to those around you, and may start noticing people in the media and in the spotlight, as well as people at work, children at your own children’s school, as well as friends and extended family members, who could be autistic. Whether or not you want to point this out to any of them is a different matter!
Autism in the workplace
Telling your work colleagues or even stating your autism status on a job application is a very tricky subject, and one that is always going to come down to individual circumstances. There is hopefully a good possibility that if you are employed, telling your work superiors about the fact you’re autistic could work in your favour, in terms of organising some strategies that would help you be more productive at work, if you’re in the workplace of course. For example, arranging a more private workstation, less involvement in open table meetings and brainstorming sessions, negotiating a reduction in the sociable aspects of the job, making a reduction in sensory overload (in terms of lights and noises and sensory stimulation) – or whatever elements would work, in your own professional circumstances. In terms of declaring your autism on a job application, that is a very personal matter, and you should probably take advice based around your individual circumstances.
I’m an autist. What now?
One of the big questions is; where do I go now? In terms of, how can I use the new diagnostic information to help make the rest of my life better? If you have only just received a diagnosis of autism and you are an adult, you have undoubtedly faced some instability in life both physically and mentally – this will have impacted your life, and there are many mental health issues associated with autism neurologies that are exacerbated by a lack of self care – e.g. taking time to de-stress and recover from ‘social hangovers‘, have some non-social time enjoying your own interests, and catch up on sleep and down time.
So now it’s time to work out your self-care plan, moving forward, and establish contentment. E.g. maybe you need to cut down on things that use up your emotional bandwidth and energy – for example, excessive social engagements that you never really enjoyed anyway; mingling with people that don’t enhance your life, within your social scene (perhaps linked to the workplace or your partner, e.g. not of your choosing); or any situation that is not really benefiting you! It’s time to cut them down; especially if you’re working too many hours and if you have too many family responsibilities and life challenges generally. In light of your autism diagnosis, if something’s not suiting you and benefiting you, now is a great time to make some changes; this is after all the first day of the rest of your life – and you deserve to live in an optimal way, getting the very best out of it! (Remember to seek professional help, perhaps with talking therapies, if you’re making big life changes that may take some getting used to.)
So in summary, your autism diagnosis has hopefully allowed you to find out more about yourself, understand what makes you tick, and realise that you’re not a failing neurotypical, but an outstanding autist (or whichever label you prefer, or fits!!) who has every right to thrive in whatever situation you choose. So if life was holding you back, now is the time to stick two fingers up to the world, leave the past’s challenges where they belong (in the past), forge your own way, and let your Aspie star shine.
A little disclaimer – here at Spectra.blog we don’t claim to be experts about Autism; the information we post here is based purely on our own exposure and experiences. Our own book ‘Autism from A to Z’ is now widely available – purchase here.
Read about autism diagnosis in our blog, below.
Also published on Medium.