Why I Can’t Be Bothered To Be Autistic Today
…or why my autism diagnosis has been nothing but a catalogue of disasters from beginning to end.
A recent Twitter thread revealed there to be a wide range of different reactions to a late diagnosis of autism.
In many cases there was an initial sense of euphoria, but after that there was often a sense of deflation with various complex emotions that seemed to change and evolve with time. Many people reported positive feelings, such as finally starting to love themselves, forgiving themselves for all their perceived failures and gaining a deeper understanding of themselves. Others felt disappointment, a sense of bitterness about how they’ve been treated all these years and feelings of what might have been.
It’s been nearly two years since I was diagnosed and I’m still waiting for those positive emotions. I was expecting relief and a new sense of belonging, but the reality has been very different.
I know I’ve been unlucky and that my personal experiences don’t mirror that of others in the same position. Perhaps getting this all down on paper will make me feel better or even if it doesn’t, I hope that other people may gain something from my experiences, even if it is only an increasing amount of schadenfreude.
From my own personal point of view, the idea that I’m autistic is fascinating. It’s intriguing, it’s an incredible, wonderful, exciting fact, but where do I go from here?
I remember that fateful day when I walked into the kitchen and my partner said
“Sam thinks that you might have Aspergers”
I was in a particularly good mood that day, so I just grinned and said “I don’t know what it is, but I like it”, and bounced upstairs.
A few days later, I had an idle moment, so I had a quick look… I then spent an entire week obsessively researching the subject, while feeling like I’d been hit over the head with a brick. I’m sure that this is a feeling that many late-diagnosed people can relate to – a.k.a. The Light Bulb Moment. I was ecstatic. For 49 years, I thought that I was the only person like me in the entire world and then I thought that I’d found a vast community who would accept me and love me and support me. I haunted all the forums and learned everything I could – I didn’t dare post anything though, just in case I wasn’t really autistic after all.
I read everything I could lay my hands on about it for a year, I lay awake at night obsessing and analyzing every little thing that had ever happened to me, to see if I could confirm or deny my autism. This was the high point, but at the time I thought it was the low point.
Fast forward. The decision to seek an official diagnosis has brought me a whole new set of issues to deal with. The following list details the majority of the significant events and issues:
1) I wanted to be referred to Sheffield Adult Autism and Neurodevelopmental Service, but my GP told me that it was totally impossible, even though I only live less than 20 miles away and it’s the nearest city. A friend of mine asked for an assessment at the same doctor’s surgery at the same time as me, was immediately referred to Sheffield and was seen within a few months. That reinforced the life-long feeling that I’m just not worth quite as much as other people.
2) When I first went to my GP to try and get an autism assessment, I took in a lot of notes as ammunition. I took copies of my results of various online tests. I also took in my own notes which detailed my train-wreck of a life (and of course, how this dove-tailed with the diagnostic criteria of the ICD-10). My GP was surprisingly co-operative, she told me that some of the people in her family had Asperger’s. She seemed genuinely interested, so when she when the appointment ended and she asked if she could have another look at my notes I said “yes”. I wondered if she was just about to go on a break or something and wanted to have a quick flick through them as she drunk her tea.
These very personal notes were scanned and put on my medical records without my knowledge and without my permission. I have requested that they be removed, but I’ve no idea if they’ve actually done it or not because I’m too upset to check.
3) I was sent to a NHS screening appointment. The woman was lovely, I had already done the pre-screening tests, so we just talked about ghosts. She told me that there was a local autism charity and that they were wonderful and would be able to diagnose me. Unfortunately, when the charity phoned me up, it turned out that they didn’t do diagnosis. I did apologise, but they didn’t seem particularly amused that I had wasted their time. It didn’t help that when they found out that I was the autistic person in question, the woman on the other end of the phone started using her talking-to-the-poor-autistic-person voice. Yes, I was made to feel like shit yet again.
4) I chose to have a private diagnosis in the end, as I was told that I was going to have to wait two years for my assessment. My mother was 78 and she was the only person who could remember me as a small child, so I didn’t want to risk it.
I was seeking a ‘formal diagnosis’, but when the letter came through it merely said that “she presents with a diagnosis on the autism spectrum”. As you are probably aware, this is not a formal diagnosis. Even if they had been using the DSM-V, the diagnosis would have been Autistic Spectrum Disorder and would have had a level associated with it. I’d spent a huge pile of cash, gone through emotional hell and I still didn’t have anything to show for it. I felt sick for a week.
I had to query this too which felt very intimidating. I felt so vulnerable and delicate at the time, so the last thing I wanted to do was to have to challenge the clinicians who diagnosed me. I managed it though and finally received paperwork with an actual diagnosis – ICD-10 Childhood Autism, which is usually just referred to as Autism, to avoid the misconception that this is a condition which only occurs in childhood. This diagnosis is the equivalent of Autistic Disorder in the DSM-IV.
5. I decided keep my official diagnosis a secret from my friends until I had received my official diagnosis letter, just in case anyone laughed at me (again). In the meantime, I decided to join a group for autistic women on Facebook. It was a ‘secret’ group, which meant that none of your Facebook friends could tell that you were a member.
The instructions said ‘Comment here stating that you are an autistic woman’. The instructions should have said ‘Send us a private message using the button at the top of the page, stating that you are an autistic woman’. I thought about this for a very long time. I analyzed the word ‘comment’ and I analyzed the word ‘here’. I researched the various levels of Facebook groups and their privacy settings. All five previous comments were invisible, so I assumed that mine would be invisible too. I was wrong.
I was sitting with my friend drinking a glass of wine before we went out one evening when she suddenly announced in an utterly horrified voice that my Facebook account had been hacked. She said that there’s something on there about you being autistic or something. I was so freaked out, I felt sick. I told her that it hadn’t been hacked and that it was true – I had just been diagnosed with autism. She just managed to splutter out the words
“well there are different levels or something aren’t they”.
I gritted my teeth and replied “it just like Asperger’s, but I had a speech delay when I was a child”, while trying my best not to cry. I knew that she had a friend with Asperger’s once, and she was fine with that, which I was I put it in those terms, but I can’t help feeling that I betrayed both myself and my diagnosis. The fact that I felt the need to ‘sanitize’ my diagnosis by speaking about it in terms of Asperger’s, caused me to feel somewhat ashamed.
She never mentioned it again. Again, I’ve no idea what she thinks about the incident. It’s possible that she thinks I had some strange kind of mental wobble which caused me to tell lies, maybe that I was joking, mistaken, confused or maybe that it was some kind of weird mind game that she didn’t understand. We’ve never fallen out, but I haven’t felt quite the same about our relationship since. I’m not angry with her, but I feel uncomfortable knowing that there is this massive ‘elephant in the room’. It just serves to reinforce the feeling that autism is something to be ashamed of and hidden away.
This put an end to a grand announcement about my autism diagnosis, because I no longer knew who knew and who didn’t. Instead of a ‘grand reveal’, I just slunk off into a hole.
6. I have always restricted my Facebook ‘friends’ to people I have actually been friends or acquaintances with in real life. I like to keep it as a ‘safe space’, although I wouldn’t normally describe it in those terms.
Shortly after my diagnosis, I saw a post by an acquaintance. She’d moved away, I hadn’t seen her for a while and it turned out that she’d recently been diagnosed with Asperger’s. She shared a post from an Asperger’s advocacy group, which I found seriously unpleasant. It lamented the loss of the Asperger’s diagnosis in the DSM-V and expressed just how appalling it was that people like them should be lumped in with people like me. I did send the group a polite message explaining my position, but I didn’t receive a reply.
I was upset for days. I felt violated, as a place I once considered safe was safe no longer. In addition to this, I feel guilty because I was slightly ruder to this woman than I should have been. She apologized and told me that she was newly diagnosed and didn’t really understand the implications. Now I feel terrible and I’m dreading the day when I’ll bump into her again.
7. About a year after my assessment, I was reading through my diagnostic report and I came across something I hadn’t noticed before. The report stated that I have current language difficulties, which I don’t. A friend recently described me as ‘one of the most articulate people he’s ever met’ and I was invited to join MENSA on the strength of my language and verbal reasoning skills (Cattell III B test). I politely queried this by email and the reply was patronizing and surprisingly rude.
Despite my protestations, they still insisted that I’ve got current ‘language difficulties’ , even though when pressed on the subject, the best they could come up with was that I appear to find eye contact difficult, that I had answered “yes” when they asked me if ‘I sometimes found it difficult to know when it was my turn to talk on the phone’ and that I used ‘understated gestures’.
I suppose that once they’ve got your money, there’s no reason for them to be polite to you anymore. That made me feel great too.
8. My relationship with my family has changed since my diagnosis. I’ve always had an excellent relationship with my mother and my sister and her family, but now I feel that it has been irrevocably damaged. Although I have had a number of conversations about autism with them, they have always been of a factual nature. We have discussed the diagnostic criteria, NHS waiting times etc., but never once have they told me how they actually feel about it.
This makes me feel as if my diagnosis is something shameful, as if it’s a taboo subject which should never be mentioned in polite company. It makes me feel slightly dirty, as if I’m not worth quite as much as I was before.
I remember sitting in the garden at my sister’s house once, not long after my diagnosis and when she said the word ‘autism’, she lowered her voice slightly. I don’t even think that she even knew she was doing it. I suppose that she thought that the neighbours might be listening.
I feel very lost and I’m not sure how to relate to them anymore. I’ve started to wonder if they’ve all been discussing it behind my back, because they certainly haven’t been discussing it with me. My mother texted me to tell me that ‘I think that we’re all on the spectrum somewhere’ which, in my view is her way of saying that the subject is permanently closed, so I guess I’ll never find out.
9. Another relative of mine works for the police and he is some kind of police autism advisor. We get on really well, so he knows that he can ask me anything and I’d be happy to answer. He has never asked me my opinion on any aspect of autism. I certainly don’t claim to know everything about the subject, but there are certain aspects of it that I do know a lot about. Some of this knowledge would be useful to him, but he’s never bothered asking. Again, this has only served to reinforce the feeling that my ideas and opinions are not valued. I don’t really know what he thinks, but my mind has been working in overdrive. Maybe he thinks that I’m a fraud or a fantasist or that ‘my type of autism’ doesn’t count. I simply don’t know.
10. Another thing that I’ve had to deal with post-diagnosis is the mass of misinformation in the media about autism. It was irritating in a theoretical sense before, but now it’s personal. I find this kind of stuff extremely upsetting (if you can count being ‘incandescent with rage’ being upset).
I’m becoming increasingly intolerant of journalists who spout inaccurate and ill-researched ‘facts’ about autism. Every time I see blanket statements such as ‘they don’t have empathy’, ‘they have no theory of mind’, ‘they can’t read body language’, ‘they can’t make eye contact’, they don’t understand idiom etc. it makes me want to strangle the said journalists, thus effectively proving their point of ‘they are prone to aggression’! I don’t see why it would be so difficult to change the language to “autistic people can sometimes….” or “some autistic people..”
11. Another thing which annoys me, is when I see statements regarding the difference between Asperger’s* and Autism. It’s quite common to read that everyone with a diagnosis of Autism has a lower than average IQ and language/cognitive difficulties, which is not the case. This is sometimes stated (as in example b), but is more often heavily implied (as in examples a and c). I have seen this so many times, that I have lost count, but here are some notable examples.
a) As of March 2017, the ‘Asperger Syndrome Profile’ page on the National Autistic Society’s website stated that:
“A clinician might describe a person as having an Asperger syndrome profile if they do not have learning disabilities and have good language skills (but still have social communication difficulties)”
I complained and they corrected it.
b) I saw an article in the Independent the other day, which stated:
“those who have been diagnosed with Asperger’s syndrome may not have the same learning disabilities as other people who have autism, such as difficulties with speech”
I complained and they corrected it.
c) I’m half way through writing this article and I’ve just come across yet another one. It’s in The Guardian this time. The article is actually about missed diagnosis in women and girls, but includes the line:
“Until recently, autism without intellectual impairments, sometimes called Asperger syndrome…”
This statement implies that Asperger’s equates to “autism with no ‘intellectual impairments’” and consequently implies that if you have a different autism diagnosis, you must therefore have ‘intellectual impairments’.
I have complained, but that was weeks ago now and apart from an automated acknowledgement, I have heard nothing. I also sent the author of the article a polite, well-reasoned and informative email regarding her article, but she has not replied. Unfortunately, The Guardian has not signed up to the press regulator (IPSO), so there’s nothing more I can do.
12. Another thing that I now have to contend with is the nauseating sentimentality of ‘inspiration porn’. It’s always been around, but this time it’s personal. A journalist will take an insignificant non-story, add a dash of autism and then, as if by magic, you’ve got a story that the public will love. It’s almost like autism is like some kind of journalistic salt and pepper that transforms the bland into the sell-able.
A came across a perfect example of this today. The real story is that a couple have won the lottery and are going to buy a bigger house (yawn). Luckily for the journalist involved, the couple’s children happen to be autistic, so the headline now reads “£1m win will help Newcastle couple’s autistic children”. That journalist must have thought that all their Christmases had come at once.
Other articles have included those along the lines of ‘Autistic Boy Dresses Up as Dinosaur’, ‘Autistic Boy Gets a Lift to The Prom’ and ‘Autistic Boy Scratches Ear’ (OK, I made the last one up).
It’s almost as if autism has been re-packaged as something that allows well meaning members of the public to feel good about themselves. All you have to do is convince yourself that the little autistic kid is cute and that’s you done for the day – no further effort or understanding needed. “Yeah, autism, I know all about that, I read an article about it in the paper”.
13. Since my official diagnosis, I have had to declare my Autism when applying for travel insurance. I was asked the following questions:
a) Will you be supervised at all times
b) Does your condition make you aggressive?
It wasn’t just one company, I got three different quotes and they all asked exactly the same questions. I don’t think I have to explain why this was a problem. I complained about that too, but they just ignored me. I suspect it’s because I told them that I was autistic when I complained – a moral dilemma that I now have to deal with.
14. I live in a village in England and far from being ‘autistic and proud’ like I dreamed, I’ve been forced to keep it a deathly secret. If it were to become common knowledge, I would almost certainly be harassed in some way, even if it were only whispering in the local shop or curtain twitching. There might be ‘laws against that kind of thing’, but if the police choose not to enforce them, then there’s not a lot you can do. It doesn’t help that the police take forty-five minutes to arrive if you do call them. I’m planning to move back to the city one day.
15. The main reason that I sought out an official diagnosis was so that I would be accepted by the online autistic community and find the understanding and friendship that had often eluded me. Unfortunately, that went pretty badly wrong too. Those of you who have read my previous blog posts will probably know where I’m going with this, so I’ll try and spare you the details.
Before my formal diagnosis, I frequented lots of autism and Asperger’s online forums. I met a lot of interesting people and learnt a lot about autism and I was looking forward to finally feeling able to join in the conversations. Unfortunately, whenever my exact diagnosis came up in the conversation, I was often met with a wall of prejudice. I have lost count of the times that people insisted that I was different to them, purely because I’m not an aspie. I have been made to feel ‘othered’ and excluded. I’m not sure that these people intended to offend. Most of the seemed to genuinely believe that Asperger’s and Autism are totally different conditions and it didn’t matter how much I politely explained that that isn’t actually the case, they refused to believe me.
Most people on these forums are perfectly pleasant, but it’s the ones who aren’t that stick in the mind. Imagine you are walking down the street, you meet a hundred people and only one of them hits you in the face with a baseball bat. Would you still say that it’s been a good day? I was made to feel like an undesirable yet again and the forums that I looked forward to joining so much before my diagnosis are now complete no-go areas for me.
16. Whenever I login to my Facebook account, I have to put with a constant stream of suggested Facebook groups, mostly consisting of groups that I’m not allowed to join, because they are for Aspies/Asperger’s/ASD. This can only be described as a massive wind-up.
Recently, I came across one with the tagline ‘Aspergers and ASD’ who insisted that the group was open to anyone on the autism spectrum. It took me a while to work it out. They actually meant ‘Aspergers and ASDs’, but had rather unfortunately omitted to put an ‘s’ on the end. This would have been hilarious if it wasn’t so tragic.
Just out of interest, I searched for Facebook groups using the following – Childhood Autism, Classic Autism and HFA. There no groups for Childhood Autism at all. I found one group for Classic Autism which I’m technically eligible to join, called ‘Classic Autism (Kanner’s Syndrome)’ , but, as the group is also open to parents, teachers and family members, I suspect that I would be persona non grata because I don’t fit their stereotype of a ‘classically autistic’ person. People with a diagnosis of Asperger’s are actually banned from joining, which I found highly amusing, as it is the first and only time that my diagnosis of Childhood Autism has been an advantage! That just leaves HFA and although there are many Facebook groups with HFA in their title, they all seem to be for parents, partners or restricted by geographical area.
I have met many lovely people in the online autistic community. The vast majority of them do seem to have a diagnosis of Asperger’s or ASD, so my diagnosis of Autism definitely puts me in the minority. I have tried to make people aware of the discrimination that I have experienced (and continue to experience), but hardly anyone seems interested (apart from a handful of sympathetic and caring individuals to whom I shall be eternally grateful) and any tweets I make on the subject go down like a lead balloon.
I’ve always put this down to pure indifference, but last night, another more sinister possibility occurred to me. Perhaps, the reason that people don’t support me is that they too believe that people diagnosed with Autism are different to those diagnosed with Asperger’s, but they’re too scared to say so. It certainly seems that way sometimes (see my article Post Diagnosis Blues).
12. I realize that one day, my partner will use the word ‘autistic’ as an insult. This will inevitably put an end to our 23 year relationship. It’s almost having your own atom bomb.
He doesn’t know about this blog and has never read anything that I’ve written. I did tell him that I was going to write one, we even discussed the title, but since then he’s expressed absolutely zero interest and has probably assumed that I didn’t actually mean it.
Nothing has really changed. I’ve spent years being dragged to social events I don’t want to go to, while forcing myself to keep a smile on my face. That’s the trouble in being part of a couple. People invite him to an event and assume that I’m automatically coming too. It’s not buy one, get one free. You’d think that my autism diagnosis might have put an end to that kind of thing, but unfortunately it hasn’t.
13. I’ve spent my life being not like other people. I’ve embraced my weirdness because I didn’t have a choice. The problem is that I’m a weird autistic too.
I know that there have been threads on Twitter where people share the fact that they don’t fit the accepted stereotypes of autistic people, which is an excellent idea. No-one should have to feel awkward because they don’t fit some outdated and inaccurate stereotype. The problem is that I’m so very different.
I hate routine and my ideal life would be if I could wake up in the morning and every day is different. I get bored easily and I need a constant stream of stimulation. Although, it could be argued that my decision never to have more than one of the same type of flower in my garden is a form of routine in itself.
I’ve never owned a pair of sunglasses. I crave bright light. If I lived alone, I’d install 100W bulbs in every room. Death Valley’s on my bucket list.
I don’t have any problems telling what people are thinking. I can spot a liar at a thousand paces. I’m fascinated by idioms and by language in general.
I have mild sensory issues regarding sound, smell and touch, but they are more of an improvement rather than a problem.
I didn’t know what ‘hand flapping’ meant and I had to look it up on YouTube. I do have some subtle stims though. I flick my fingers, obsessively tap out rhythms, dance with my hands when nobody’s looking.
I don’t have meltdowns.
On paper, you might be forgiven for thinking that ‘she can’t be autistic’, but I am undoubtedly Code AAF. My autism colours every thought I’ve ever had and everything I’ve ever done. Sometimes, I feel like a fraud. In the past I tried desperately to be accepted as a real ‘normal person’ and failed. Now, I feel like I’m failing to be a real ‘autistic person’. I’m still not fully accepted and probably never will be.
The fact that I have a diagnosis of Autism and not Asperger’s or ASD does put me in an awkward position. If you visit autistic forums/Facebook groups etc., you could be forgiven for thinking that the word ‘aspie’ is synonymous with ‘someone who has an autistic spectrum condition’, but it isn’t. I get the impression that many posters automatically assume that everybody reading it is an aspie (or has a diagnosis of ASD, as people with this diagnosis seem to be considered honourary aspies). Perhaps they assume that no-one with a diagnosis of Autism can read or use a computer – I really haven’t the faintest idea.
Like many autistic people, I’ve had people telling me online that I can’t be autistic because I’m too ‘high functioning’, that I’m ‘not like their child’, that I’m doing it for the attention, that there’s nothing wrong with me, that I can’t be autistic because I can make eye contact/run a business/have friends etc. This doesn’t bother me so much and if it upsets me, there is plenty of support to be had from the #ActuallyAutistic community,
What really hurts is the ‘othering’ that I get from parts of the online autistic community, presumably because they assume that my exact diagnosis means that I am too ‘low functioning’ for them to want to associate with.
I’m basically getting it from both sides. One side is giving me hate because I’m supposedly too ‘high functioning’ and the other side is giving me hate because I’m supposedly too ‘low functioning’. I’m trapped in the middle trying to make sense of it all.
I’ve spent my entire life as an outsider, existing on the periphery of various social groups, but never being fully accepted. I had hoped that this would change once I got my diagnosis, but it’s happening all over again.
About six months before I first realized that I was autistic, I had a conversation with partner. He told me that most people didn’t particularly like me, they found me intense and I made them feel uncomfortable. It wasn’t anything I didn’t already know. The problem was that he refused to tell me who he was referring to. I had no alternative but to assume that every single person that I knew disliked me. I couldn’t bear to look at anyone, for fear that they were ‘on the list’. This has made me question every social relationship I’ve ever had and led me to the conclusion that the vast majority of people that I had previously considered to be friends, didn’t actually like me.
My autism diagnosis hasn’t made this any better. If anything it’s made it worse because in some ways they were justified. I AM weird, I AM different and I’ve got the piece of paper to prove it. Is it fair of me to expect them to respond to me in any other way? I’ve more or less given up on people now and I am finding it increasingly difficult to trust anyone.
The combination of my partner’s revelations about my social life and the consequences of my autism diagnosis has combined to create a ‘perfect storm’ (or rather a perfect shitstorm).
I work from home and most days I just throw on a random selection of clothes, I don’t even care if they’re clean. I hardly ever go out of the house now and am becoming increasingly miserable. I’m finding it very difficult to sleep at night. I’m not sure where I go from here. Perhaps I am suffering from that ‘autistic burnout’ that I hear so much about.
When I come across others with similar issues, they are often advised to take solace in the autistic community. I’m sure that this works for many people, but for me, there are complications.
I read extensively before my diagnosis, including some of the ‘inspirational’, ‘self-help’, ooh-isn’t-it-great-being-an-aspie type books. I won’t mention them by name, as I’m sure that most of you will know what I’m referring too. They convinced me to believe that diagnosis would be a good thing, that it would lead to greater happiness and a new understanding of myself etc. This hasn’t actually been the case and I almost feel slightly cheated – although you could also argue that it was my fault for believing it in the first place. Nowadays, I see such books as nothing but piles of fluffy woo and I’m torn between ceremonially burning them and giving them to a charity shop.
Reading back over this article, I realize that I probably come across as the sort of person who enjoys being offended, but nothing could be further from the truth. I just want a quiet life and to be treated fairly and with respect. I wish that I didn’t have to deal with any of these issues, but they have been thrust in my face.
I am in a vulnerable position now. Having an autism diagnosis means that people may start to treat me differently, that they no longer respect me opinions and automatically assume that everything I say can be discounted.
I’ve been plunged into a Kafkaesque situation where strangers insist that I’ve got language difficulties when I don’t, well respected national newspapers print lies about me and people that are exactly the same as me insist that I am different and it seems that no matter what I say or do or what evidence I present, they will never change their minds.
I understand that I’m an anomaly and that there is no place for people like me. It doesn’t matter if you’re a black sheep in a field full of white ones or a white sheep in a field full of black ones, the net effect is the same.
Taking all those things into consideration, I’m not sure if getting a formal diagnosis was a good idea at all. It’s like opening Pandora’s box and it might be better if I hadn’t. I appreciate that for some people, getting a diagnosis is a positive thing and I am happy for them. I can only tell the truth about my own diagnosis and unfortunately, I haven’t been so lucky.
Sometimes, when I’m in a rare positive mood, the sun is shining and everything’s going well, I feel a sense of calm. It all seems like some kind of strange dream that I have just woken up from.
At other times, I feel like I’ve been cursed somehow, like I’ve been forced to ingest poison and it’s slowly killing me.
Sometimes, I wonder if getting myself diagnosed with autism might be the most stupid thing I’ve ever done.
* You may think that Asperger’s is long gone, but don’t forget that I live in the UK where people are still being diagnosed with it, using the ICD-10.
Either way, it won’t do me any good, as I don’t have either of these diagnoses and unless I push very hard to get my diagnosis updated to ASD when the ICD-11 finally comes out, I never will.
If anything, people with a diagnosis of Autism will become increasingly marginalized, as all newly diagnosed people will be diagnosed with ASD.