Eight weeks ago, at the ripe old age of 32, I was finally diagnosed with Autism.
I’m not surprised and neither is anyone close to me – some have wondered why I even bothered seeking a diagnosis at all when I have seemingly managed to do so much in my life prior to diagnosis?
This blog explains why I decided to seek diagnosis, what the assessment process was like and what I hope my diagnosis holds for the future.
What’s the point of Adult Diagnosis?
It’s hard not to feel rattled a bit by this question, but in truth, I think a lot of it stems from a complete misunderstanding of autism in adulthood. Often when people talk about autism it is in reference to children and young people – autistic adults are very often a forgotten population.
Personally, it was also hard for others around me to understand. I’ve held down jobs where I’ve performed to large audiences, worked large scale events and even managed teams. I have a BSc and a PGCE with Qualified Teacher Status and my CV is full to bursting. So I don’t seem autistic? I cope well…I don’t need help?
Autistics, particularly female autistics, often mask typical autistic behaviours in order to fit in. We are the chameleons of the social world, changing ourselves to fit the environment we are in to survive. On the outside it can seem like I’m holding it together but inside I’m in turmoil.
I once worked a job for example, where my employer insisted on blasting music from behind me loud enough to hear on the street outside. I couldn’t hear customers and I worked very slowly often making errors managers had to correct. They wouldn’t listen to me when I explained how difficult this was making life for me and I left after just three months. Background noise is incredibly distracting for me – I used to regularly get woken up at night because when an iPhone is fully charged the charging noise changes pitch – most neurotypicals are not even aware of this. I am also driven to distraction by cat deterrents and the local solar farm…so I never stood a chance with Justin Bieber turned up to eleven.
I worked another job where my manager asked me to explain an incident to them but they only permitted me to speak for one minute because they didn’t want the ‘usual unnecessary details’ and they wanted me to get to the point because they were short on time. The difficulty is I see everything in its finer details – that’s just how my brain works. Very handy if my partner wants to know where I last saw *insert random small object*, exceptionally helpful if you want me to proof read or look over something for missing ideas but massively unhelpful when your employer sets a timer!
These are just two examples but I could literally fill WordPress with a lifetime of these incidents. The latter I even explained in my autism assessment and my assessor was nothing short of horrified. To be honest, I don’t think I had even registered how horribly I had been treated in that moment until then.
But it’s not just about work. Yes, the Equality Act can help with adjustments to my work/study and lift some of life’s burdens but a lot of diagnosis is simply about being able to finally understand yourself.
I have always worked very social jobs – largely with children and young people, indeed I still tutor online now, so it seems very strange to consider myself a very lonely person. I have my partner and two close friends but I’ve always been an outsider.
People often cut me off – one cut me off because I never took the time to like their social media posts and I never showed an interest in their life or asked them questions about their life. At the time I felt like an awful person, now I know I’m just autistic.
I often accidentally cut others off – I often forget to message. Algorithms on social media apps mean I can have a high level of interaction with someone and then they disappear into the abyss and they then, being neurotypical, take offence when I simply forget they exist. I used to feel awful about this, but now I know that I’m just autistic.
Diagnosis is a formal validation of something you likely already suspect to be the case. It’s a weight off and allows me to more succinctly explain my challenges to others. Yes – I’ll still struggle my way through a lonely life, but I know now that’s not and never has been my fault.
How I was diagnosed?
Unfortunately, on little more than minimum wage, I don’t have the money for private diagnosis or care – so I had to wait it out.
I got lucky in that in my region we are able to download and send the referral forms to the Adult Autism Service ourselves. In most areas the first step is to try and convince your GP to refer you. If this is your region, I recommend writing down what you have to say before seeing the GP and giving reasons as to how a diagnosis will support you in your work/study/life. Many GPs have been dismissive of patients in the past, often those who are able to hold down a job or have a family but it’s perfectly possible to be autistic and have a successful career and/or family life.
The referral paperwork offered numerous pre-screening questionnaires after which you may be placed on their waiting list. For me, this wait was two years and eight months from them accepting my paperwork to my assessment appointment.
I opted to have my assessment online, as I can’t drive and getting to a community setting for an assessment was challenging for me. The assessment appointment took around three to four hours in total, although fairly early in the appointment I was made aware of the track I was on.
The assessment was mostly an interview in format going back over my childhood, school, adult life, work, relationships, friendships and trauma. Some of this was quite upsetting and breaks were allowed. If you have a family member or long term partner available they will often interview them too but this is not always necessary.
There was also some activities – I was asked to describe various objects, explain social scenarios and recognise emotions in photographs.
Given some of my answers, my assessor also filled out the referral questions for ADHD with me and has sent that to my GP. While the service I attended doesn’t offer ADHD diagnosis, they can still heartily recommend it and help take down the GP barrier for you the other side. Autism and ADHD commonly occur together so it’s always something to watch out for.
I was told at the end of the assessment the outcome and Autism Spectrum Disorder (ASD) was added to my electronic health record. I am still waiting on the full report from my assessor which will go to my GP and will be required for university support but I was at least able to walk away with my diagnosis.
What next?
Autism diagnosis as an adult is a little strange. Once confirmed you are basically released back into life with exactly the same support as before. There’s nowhere they can refer you to, no medication they can give and no immediate support they can offer.
There are no local support groups, I am in a good place right now and I’m not accessing any mental health support and I am plodding along as I was before. So what has changed for me?
Training
I spent quite a few weeks post-diagnosis in a rage. I spent almost three years of undergraduate study training as a Children’s Nurse and one full year completing my Primary Teaching PGCE and in that time I received only about two hours of training (across four years!) I raised this on Twitter and received the expected backlash – these courses are already too full, the training is poor anyway, training won’t change anything and what about other SEND needs?
Yes – the courses are already too full but the fact I spent more collective time chasing nurses for their initials to prove I had attended my placement shift or queuing for a photocopier than learning about a neurodiversity that affects at least 1% of the population stinks. You can’t convince me otherwise.
Yes – a lot of autism training is painfully outdated and in my experience usually wastes one third of the session on the ‘History of Autism’ and Kanner/Asperger (the less said about the latter the better!) Yes – the training is often filled with stereotypes and fails to truly address the diversity of autism. Just because I said it wasn’t enough, doesn’t mean that I think more time on the same trash would help. We need better quality and practice relevant training guided by autistic voices…but even then, more time should be allocated.
The belief that the training won’t change anything is a disappointing one. Indeed, it was a Future Learn course on autism, prior to volunteering with a digital arts group for autistic young people, that encouraged me to refer myself for diagnosis. All training, not just on autism, should come with a warning that *insert training topic* is experienced differently by different people. Too often I’ve been in training that follows the journey of one or two specific case studies that are then taken to be gospel by the attendees.
And what about other SEND? Well I commented on autism in this case because I am autistic and it’s not entirely my place to go talking on behalf of other diversities whose experience I don’t share. But, autism coexists with a lot of other medical conditions, mental health challenges and neurodiversities which makes it a great springboard for further reading. Also, raising awareness and devoting energy to one area of disability doesn’t necessarily detract from others – adjustments and awareness for one can bring benefits to others.
I would love to see things improve and given time to process my new diagnosis, hope to seek out ways I might be able to help support this. Meanwhile, I’ll keep sharing my experiences and hope to spread a little learning that way.
Self forgiveness
The biggest change for me has been the load my diagnosis has taken off.
I’m not a bad person. I’m not a bad friend. I’m not a rubbish employee. I’m not a failure, nor am I a quitter.
I’m a fighter and I’ve achieved a lot more than I think, all without any support.
In fact, I’ve gone one step further and started to identify the things I’ve achieved because of my autism.
- I’ve been an effective mentor, tutor, and educator to autistic and ADHD children in the past. I thrived on my SEND placement and volunteering at an art group for autistic young people. The safe, inclusive, dampened sensory environments weren’t just for them – they were great for me too, and allowed me to work to my full potential.
- I’ve run half marathons and walked huge distances (Brighton to Eastbourne in a day!) I always put this down to my stubbornness but my ability to follow a training schedule and push through is definitely led by my autistic brain.
- I’ve generated useful ideas at work. I’ve always been the ideas girl. I spot gaps, I ask random questions, and I see what others don’t. My brain annoys me 90% of the time. Want to know a constant? The first forty elements of the Periodic Table? My bank card number from 2008? Or fourteen of my previous postcodes? Still got it – still can’t remember where I put the pen I was holding five minutes ago though. But sometimes, when your brain is wired differently to everyone else around you – it turns out to be mighty useful.
I’m learning to love my autistic brain!
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