Getting A Diagnosis – The Autism Edition

This is something I’ve been meaning to write about for a while but it’s such a big topic that I was very daunted by just how much I needed to include. I’d open a word document, stare at it for ten minutes, and then switch to something else. You’ll see what I mean. Getting a diagnosis is a complicated and emotional process that is so different for everyone but I had no idea how difficult it would be when we started pursuing it. So I thought I’d write out my experience, just to put out into the world one version of the story. Maybe yours is similar, maybe it’s different. Hopefully you’ll get something out of it either way. And if you’re trying to get one, maybe this will give you some idea of the hurdles. I don’t want to scare anyone off; it was a brutal experience but it was absolutely life changing and life saving, both for my mental health and for who I am as a person.

I’m going to split this into two posts because although they’re linked, the processes for getting the mental health diagnoses and getting the ASD diagnosis were very different for me. I don’t know if that’s the same for everyone. This post will be about getting the ASD diagnosis and follows on from the one about my mental health diagnoses. If you’ve read that one already, you’ll know that it took several years to get to that point.

During our search – mine and my Mum’s – for an explanation as to why I was struggling so much, Autism came up several times. We didn’t pursue it straight away because I didn’t fit what we knew of it and because multiple health professionals had dismissed it. So we focussed on the mental health perspective and managed to get those diagnoses in January 2015. But it kept coming up and after talking to practically everyone we knew, we ended up at ASSERT, a local charity that supports people with Autism Spectrum Disorder. On their advice, we contacted the Brighton and Hove Neurobehavioural Service and that resulted in an assessment (in August 2015).

The assessment itself was pretty intense: three hours of answering questions about my life and my experiences, followed up by another appointment where it was all explained to me. The woman who assessed me was lovely, which made it easier, but it was exhausting. Afterwards, I received an eight page report with all the relevant information. I know I’ve already written a post about the presentation of Autism in women but this is the more detailed, clinical side of it, to give you an idea of what was asked and what went into getting an Autism diagnosis.

The questions – and the report – were broken down into several sections:


DEVELOPMENTAL HISTORY

As a child, me and my brother played make believe games that involved the creation of very elaborate worlds, with characters and histories, and they often lasted for months, if not years. My other staple ‘game’ was arranging my toy animals into “carefully crafted scenes.” I did this over and over again, in a “notably ordered and systemised” way.

I was incredibly shy and although my speech and language were ‘well developed,’ I did struggle socially. I didn’t have many friends but the friendships I made were incredibly important to me (“the very commonly observed capacity for young women on the spectrum to make very intense, uncompromising attachments to individuals”) and the loss of those connections was “deeply traumatic.”

I did well in school because I had “an unyielding need for perfection” and a “capacity for intense engagement in subjects.” No one (including me) noticed any difficulties because I was quiet and hardworking (“like many young women on the spectrum”) but having said that, I was absolutely exhausted by school. I’d get home, collapse on the sofa, and kind of zone out, almost leaving my body. Time would pass and while I was still functional, it felt like I was on autopilot until I ‘returned’ to my body. That was how I processed school and how it completely exhausted me.

The one thing that I did notice and struggle with was my absolute need to follow every rule: “Lauren has a lifelong sense of right and wrong and cannot deviate from rules.” I’ve always struggled with the way people seem to know which rules are important, who they apply to, and so on. And even when there was good reason to break a rule, I could not do it.

“Moving to the chaotic, unstructured, unfamiliar sixth form [was] deeply traumatic. It was at this point that her meltdowns and mental health became of acute, identifiable concern.” Couldn’t have put it better myself.

RECIPROCAL SOCIAL COMMUNICATION

“Although Lauren has worked hard to integrate socially, she has clear lifelong social difference.” Socialising has always felt incredibly complicated and stressful. “Lauren has the almost universal autistic sense of feeling ‘alien’ (or as if behind glass) from other people. She feels exhausted by the social world. People are mysterious and chaotic to her, and although she is highly observant of others and learns and copies social behaviours, the possibility of unpredictable social behaviour provokes acute anxiety. She shows evidence of the triad of impairment but this is scaffolded and obscured by her intelligence and vigilance.”

Eye contact is tiring and uncomfortable. It feels so intimate – too intimate. And I don’t know which eye you’re supposed to look at.

I’ve always struggled with making phone calls, particularly when it’s someone I don’t know. Because I’m only hearing someone’s voice, I feel like I’m not getting enough information to ‘read’ the social interaction and so I get really anxious about saying the wrong thing or getting overwhelmed and missing things. I can just about handle it with people I know, where I’ve learned the ‘conversational rhythm.’

It’s a myth that people with Autism aren’t empathetic. I’ve always felt like my empathy is overwhelmingly strong, to the point where it can actually incapacitate me. For example, after finding out that a friend was severely ill, I was so distressed that I was barely able to get out of bed for about three days: “[Lauren] is prone to fixating on helping people and is often very upset when this is not possible. Women on the spectrum are often highly sensitive to suffering in others and are drawn to the ‘caring’ role. This can leave them socially and emotionally vulnerable.”

I get overwhelmed very quickly, because I can’t process things as quickly as they happen. The best way I’ve found to process stuff (experiences, sensations, emotions) is to write everything down: “Lauren writes everything down in micro-detail and through this process she has learnt much about the human state and the social world that is not intuitive. The detail and perseverative nature of this recording is authentically aspergic.”

RESTRICTIVE AND REPETITIVE BEHAVIOURS (NEED FOR SAMENESS)

I’ve always had the intense focus and ‘restricted interests’ that people often associate with Autism. I’ve bounced from one to another to another my whole life. When I was twelve, I wrote a twenty thousand word story that I researched in “encyclopaedic detail.” I even knew the longitude and latitude of where all the characters were throughout the story. Every detail is important: “Authenticity is of enormous importance to her.” A truer statement was never made and it’s true for every part of my life, from my songwriting to the clothes I wear.

I’ve also always had a “strong need for sameness and routine.” I didn’t even really realise it until I was asked. Everything I ‘routinely’ do has a very precise order: “She has certain non-functional rituals that she needs to perform in order to feel safe and soothed.” And any change – big or small – can send me into a spiral of anxiety, which can lead to a meltdown. “She has a need for perseverative repetitive activity to soothe her anxiety and dampen the flood of intrusive information. She has the same TV programs on and listens to the same audiobooks again and again.”

SENSORY SENSITIVITY

I have always been “highly sensitive to sensory phenomena.” I struggle to manage and process se nsory information but with sound and taste in particular. But all of my ‘sensory sensitivities’ increase when I’m under stress.

“[Lauren] appears to be particularly affected by multiple streams of sensory experience: finding, for example, places where people gather cacophonous, overwhelming and she is swamped in anxiety about all the possible permutations of each person’s life.” When I walk down the street, I’m overwhelmed by the fact that every person I pass has favourite colours, foods they don’t like, phone numbers they can’t remember, important dates coming up, and so on and so on and so on. It’s beautiful and terrifying and exhausting.

One of my biggest issues sensitivity-wise is with food and I’ve struggled with it all my life. I’m very sensitive to taste and texture so I can only eat plain foods and I hate having different foods touch each other. I find pretty much everything to do with food overwhelming: the ingredients in a meal, the preparation of food, all the sensory information… This is apparently a common autistic experience.

“Some evidence of hypermobility which is a unifying diagnosis with autism.”

CONCLUSION

“The essential features of ASD as specified in DSM-V are persistent, pervasive and sustained impairment in reciprocal social communication and social interaction; and restricted, repetitive patterns of behaviour, interests, or activities and may be most apparent in difficulties in processing and responding to complex social cues. These symptoms are present from early childhood and limit or impair everyday functioning.” My assessor took in everything we’d told her and determined that I met the diagnostic criteria for Autism Spectrum Disorder, at level one, which is ‘requiring support.’ I meet all the difficulties likely to be experienced at this level.

“It is apparent that Lauren also has issues pertaining to personality disorder. She was vulnerable to the development of personality disruption due to the complexities of her developmental difference and her experience growing up (essentially as a ‘square peg in a round hole’) was sufficiently complex and invalidating as to cause her enduring distress and propensity for emotional intensity.”

Getting the diagnosis itself was very affirming but the conclusion of the report was also really positive: “She has amazing potential and I am really hopeful that, in time, this explanation will come to be a meaningful map for a resilient and contented future.”


This isn’t a complete report, just some snippets to give you an idea of what the session was like and some of the traits that make up an Autism diagnosis. It’s not a checklist or the ASD criteria. I just remember having no idea what was going to happen and the anxiety that that caused me. So if I can make it less scary for someone else, that’s something I really want to do.

(Again, no relevant photos but here are some from around that time.)

When Anxiety Is The Only Thing On The Menu

I know I touched on issues with food already this week but I thought I’d go into a little more detail so those of you who don’t experience this difficulty can get a glimpse into what it’s like. Food is a massive problem for me; it’s a daily cause of stress. Where am I going to be? Will there be food I can eat? If not, can I bring my own food? Can I get away with not eating or will people notice and point it out? It’s a constant loop and that is exhausting.

As I said in a recent post, I’m incredibly sensitive to the flavour of food; add even the smallest sprinkling of pepper to a meal and I can’t eat it. It overwhelms me and I just cannot eat it. Forget spicy food entirely. So I can only eat the simplest things: plain rice or pasta, unadorned chicken or fish, and so on. I practically live on fruit and vegetables. When there are lots of different flavours, I get overloaded. I can’t describe it better than I did in my sensory sensitivity post: “It’s like throwing a load of different coloured paints together: you don’t see all the different colours, you just get one new colour and it often isn’t a nice one.”

I’m also very sensitive to texture; there are very few things that don’t trigger my gag reflex. I’m sure all of you have experienced that at one time or another so you can imagine how desperate I am to avoid it. I remember a particularly bad experience with tofu; I’m actually shuddering just thinking about it. I have a similar problem with wet foods touching dry foods. It triggers the same response. So while my family – who are all fairly adventurous when it comes to food, at least from my point of view – flip through a library of cookbooks, I eat simple meals with ingredients that I can separate and I eat them over and over again.

Honestly, I don’t mind that. It’s safe. It’s comforting. It’s the pressure to eat ‘like a normal person’ that’s stressful. Going to restaurants and eating in public is a major anxiety: it’s very rare that there’s something on the menu that I feel able to eat and asking for something simple feels impossible. I find asking for anything difficult and drawing attention to this issue is something I try to avoid if at all possible.

As a child, I was labelled a picky eater and strongly encouraged to try different food. I know that my family and friends were just trying to help me: they were trying to prepare me for a world that would expect me to eat complicated food. But instead of it getting easier, it got harder. So eventually we reached this uneasy stalemate. But getting a diagnosis made a massive difference: it gave people an explanation, made them realise that it was something I couldn’t help. It took the pressure off in a big way. But as important as that is, it hasn’t fixed my problems with food. And as much as I struggle with it physically and struggle to get the right nutrition, it also has a big impact on my mental health.

People make assumptions when they hear how little I can eat. They think I’m being picky or deliberately difficult and see me as an inconvenience. I know that it’s not my fault and that it’s a valid reason to struggle but I find it incredibly embarrassing that I can’t eat like everyone else. I feel like it keeps me from really becoming an adult, especially when so much socialising revolves around the consumption of food and drink. It feels like a weakness; it’s something I’m ashamed of, which definitely feeds into both my body image issues and my depression, as well as my anxiety. When I get really low, as in dangerously low, food becomes even harder and I just lose the will to eat all together.

I vividly remember being about ten years old and reading a magazine article about a girl who had to have intravenous nutrition for medical reasons and I found myself wishing I could have the same, wishing I could not eat because it would be so much easier. And I still relate to that. I would give anything to be in control of this, rather than it have control of me. I wish I could choose what to eat, rather than navigate around the things I can’t. I wish I could eat according to my beliefs instead of having to worry about whether I’m getting enough protein or calcium or whatever (I would love to be a vegan, or even a vegetarian, and often feel guilty that I’m not but health wise, it’s ill advised when there’s already so little that I can eat). I wish I didn’t have to be afraid of blowing a sensory fuse, of getting completely overloaded, which can trigger a meltdown. I wish I could enjoy food. But I can’t and I’m scared I never will.

Introducing my Mum

In this post, I’d like to introduce my Mum, Sandra. We’ve been talking about her writing a post or two for a while because I think she’s got some really valuable stuff to add to the discussion of Autism, and Autism in women. Most of the resources around Autism tend to be written by parents of young children and while that viewpoint is important, the lack of any other viewpoints is something that needs to be addressed. There’s very little written by young people with Autism and I can’t find anything written by the parents of young people with Autism. So we thought we’d throw this out there.

We’ve never had a typical relationship: I’ve never felt the need to rebel and I can probably count on one hand the number of times we’ve really argued. We just get on really well and we share everything; we talk everything through. So she’s been on every step of this whole journey with me, from the moment I realised that what I was feeling wasn’t normal. She must’ve talked to hundreds of people – friends, family, health professionals in multiple fields – and spent hours and hours reading up on every possibility. She’s been to every appointment with me and she came to therapy with me until I felt confident enough to do it by myself. She pushes me when I need pushing and she protects me when I need protecting. I genuinely wouldn’t have made it this far without her. She’s always believed in me and she’s never stopped pushing to get me the help I needed, not for a moment. I am more grateful than I could ever express. She spoke for me when I couldn’t and she still does if I need her too. I only have to ask and she’s there. She is my hero. I couldn’t be me without her.

Here is a little paragraph from her to start her off:

‘Get out and take up dancing!’ was one of the many pieces of well-meaning advice I was given during my search for help for Lauren. ‘Tough Love’ was another suggestion and was just another way of saying the same thing. Because of the age she was when we started seriously looking for answers, many people, both professional and otherwise, saw much of her anxiety and depression as the ‘normal’ behaviour of an adolescent. But I felt there was more to it and knew I had to try and get some answers. So I began researching: talking, reading, anything to better understand what I saw Lauren struggling with. Now, several years later, I still remember my response to that suggestion: ‘I will take up dancing once I find the help my daughter needs’. And I have been lucky. We have been lucky. We have found some extraordinary people to help and support her but it has often been a long and isolating journey and one that I wonder whether might be useful to share for other parents or carers finding themselves in a similar situation.

We’ve been throwing some ideas around but nothing’s written yet. Between work stuff, moving house, and my mental health, there just hasn’t been the time. But we’ll get there. Stay tuned!

 

Introducing My Autistic Self

Someone asked me the other day how I told people that I’d been diagnosed as autistic and I realised that I’ve never told that story on here. So I thought I’d post it as part of Autism Awareness Week. Maybe it will be helpful to some of you.

I was between my first and second years at university and I consider myself very lucky that I was diagnosed during the summer holiday. It gave me time to really process the news and figure out how I felt about it, as well as decide who I wanted to tell and how I wanted to tell them. I could absolutely set the pace and break it down into smaller tasks. It’s a big thing to tell people so I wanted to find the best way to do it.

I decided that the best way for me to tell people was to send a Facebook message. There wasn’t going to be an opportunity to tell everyone at once and I’ve always felt more comfortable sharing important news through writing. It gives me more time to think about what I want to say and I can always walk away and come back to it if it isn’t coming across the way I want it to. It also means that I don’t have to worry about processing other people’s reactions; I can think about one thing at a time.

This is what I ended up with:

“Hey guys, I just wanted to let you know of a change in my life without making a big announcement. Over the summer, I was diagnosed with Autism Spectrum Disorder (still commonly referred to as Asperger’s). Apparently it’s commonly missed in girls and young women as it presents similarly to Depression and Anxiety, which, as many of you know, I’ve struggled with for a long time. But this is a good thing because I’m finally getting the support that I need/have needed to manage it, the social anxiety, general anxiety, etc. Overall, nothing’s really changed, other than the fact that this thing I’ve been struggling with has a name now but I wanted you guys to know since it does affect my life. If you want to ask me anything, please do J Look forward to seeing you all soon.”

The second job was to choose who I wanted to tell. Within my family, it hadn’t been a secret that we were looking into an Autism diagnosis and so a lot of them already knew by this point. So that left friends and acquaintances. I wanted my good friends to know and I also wanted to tell the people that, because of university, I would be spending a lot of time with. It was such a big thing that I didn’t want to feel like I had to keep it a secret. I also didn’t want to accidentally spring it on anyone. I went down the Facebook list and tried to add everyone I thought fitted into those categories. I’m sure there are people I missed but I did my best.

I hit send and then did my best to forget about it for the rest of the evening. Just sending the message was a lot to process. So I had some quiet time with my family, watching TV and having dinner. And only then, a few hours later, did I check the response the message was getting. These were all lovely people so I wasn’t expecting a negative response but I was a bit overwhelmed by how positive the replies were. I unashamedly admit that there were several messages that just about had me in tears. I don’t think it’s fair to post anyone’s actual words but I had people thanking me for sharing the news with them, telling me I was brave for doing so, saying that they were glad I was getting support and that they loved me. Those messages still mean so much to me.

Of course, there have been occasions where I’ve had to tell people face to face but the positive response really boosted my confidence. So I hold up my head and say the words like they’re a shield to protect me. I don’t always feel as self-assured as I appear to when I tell people but I have found that it helps my confidence to act like I do. I’m not generally a fan of the ‘fake it ‘til you make it’ approach – I usually find it invalidating – but in this case it has helped. Maybe I’m not faking it, maybe I’m using it as something that protects me rather than something that weakens me. I don’t know.

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Learn With Me

I was diagnosed with Autism Spectrum Disorder at the age of twenty, after actively struggling for several years. When I use the word ‘actively,’ I mean that, while I had had difficulties with all the things that turned out to be characteristics of Autism, they had become really hard to deal with and were having a serious impact on my life and my mental health. For example, I’d always found socialising confusing and stressful but I’d managed it for most of my life, thinking that that was just how I was built. Ultimately, that’s true but knowing where it comes from has been very helpful, both in validating that struggle but also in helping me to learn how to cope with those feelings. So, the diagnosis was a really big deal but I still think a lot about why it came so late and what that means.

In my opinion, there was one big reason why it took so long to get a diagnosis and that was the lack of awareness and understanding around both mental health and Autism, especially in women. Because Autism in women often presents very differently to the stereotypical male presentation, no one even mentioned it until we’d been looking for an explanation for more than eighteen months. I have a couple of blog posts about the process of getting my diagnoses coming up but the short version is that we started out by looking at my mental health. We went to various people but no one took my anxiety, my depression, and so on as serious problems, brushing them off as things that everyone deals with. So it took a lot of work to get even one person to recognise that what was happening was an actual problem, and then even more work to get them to see that that was part of a bigger pattern. And I know that all of that was down to this general lack of awareness about how Autism can manifest and again, how it can manifest in women.

I am very grateful to have my diagnosis, regardless of how long it took to get it but I do think that getting it so late has had a detrimental effect on me:

  • Expectations, my own and those of others – Having grown up assuming I was neurotypical, I have always compared myself to my neurotypical peers and hated myself when I couldn’t measure up. When I got to sixth form, I started to really struggle (mentally, socially, academically) and so the whole thing started to snowball. And because I was comparing myself so viciously to those around me who were coping so much better, I did great damage to my mental health and self esteem. Had I known that my brain worked differently and that I might need support, those two years of my life would most likely have been an altogether different experience. Even now that I know the difference is there, I still find it really difficult not to compare myself to others; I still often see myself as less capable or less intelligent or less whatever word is relevant to the situation.
  • The mental health consequences – While this is not something I can scientifically prove, the chances are that this whole process has had an impact on my mental health. Being repeatedly invalidated and brushed off definitely made my depression and anxiety worse. That invalidation may also have triggered the development of Borderline Personality Disorder; I’m not qualified to make a definitive statement on that but between discussions with my health professionals and my own research, it’s a theory if nothing else.

I’ve often had friends and family ask what they can do to help me and to be completely honest, I don’t know. I’m still trying to figure all of this out for myself: what’s affected, what helps, what doesn’t… Sometimes it feels like, just because it’s my diagnosis, people think I have this deep understanding of it. I’m definitely more clued in than I used to be but even two and a half years later, I don’t always know what to do when something comes up. I think the only thing I can say is this: “Learn with me.” This is a process, which involves a lot of trial and error and over-planning and screwing up. When it doesn’t work, it’s no one’s fault. We just learn and move on to the next thing. But hopefully, we can navigate it as a team rather than a group of individuals.

I try not to spend too much time thinking about how my life would’ve been different if I’d been diagnosed at a younger age because there’s little to be gained from it. It is how it is. But occasionally the thought creeps in and I imagine this life where I’m so much more productive and engaged and independent. I don’t know if that’s how it would’ve played out but it’s a seductive thought. But as I said, I try not to go down that rabbit hole. I think it comes down to this: there are people I wouldn’t have met and experiences that I wouldn’t have had if I’d been diagnosed as a child and ultimately, I wouldn’t give those up for anything.

The Consequences of an Autism Diagnosis

During my attempts to get a diagnosis, I had many people giving me their thoughts on finding a label and that only increased when we started pursuing an Autism diagnosis. It was almost as bad as the amount of people telling me to have a bath or go for a walk to help my depression. Everyone had an opinion on it and the majority of people were, at best, wary and, at worst, completely against it. But I knew I needed a diagnosis – an explanation – for why I was struggling and now, two and half years after my diagnosis, it’s clear that it was the right move for me. I’m not holding it against those people because they were only trying to look out for me but it did add to the stress of the situation so I thought I’d write out some of the positives and negatives that I’ve experienced around my diagnosis.

POSITIVES

AN UNDERSTANDING OF WHY I WAS STRUGGLING – Before my diagnosis, I was very aware that something was causing me to struggle and I needed to know where that was coming from. I could see that I functioned differently and, until I had an explanation, that was because I was broken. That was how it felt. If a doctor told me it was something – something that had been researched, had a name, something that other people had – then it was something that I could do something about. But if it went unnamed and uncategorised, it was because there was something wrong with me. So, to learn it was Autism, was actually quite a relief. Rather than being an intangible black cloud that was swallowing my life, it had boundaries and patterns and strategies to work with. That was massively helpful to me.

A VALIDATION OF MY STRUGGLING – Before my diagnosis, I was consistently dismissed by doctors and other medical professionals when I tried to get help. If I mentioned anxiety, I was told that, ‘everyone gets anxious.’ If I felt that I absolutely couldn’t do something because something in my body was screaming not to, I just had to pull myself together. If I talked about my debilitating fatigue, I essentially got a shrug of the shoulders. Now at least people listen. They don’t always have the answers I want – sometimes they don’t have answers at all – but I’m no longer being dismissed.

MAKING SENSE OF WHO I AM – The things I had been struggling with were taking over my life and, without knowing what caused it, that made me feel very lost. I struggle with identity stuff anyway but when all my thought and energy was being devoted to these problems, there wasn’t the space for anything else. With the Autism diagnosis, things became much more straightforward. Of course this may be different for other people but for me, I could put the Autism in a box in my brain and that allowed me to see what was there. I started to get more of a sense of who I was and who I wasn’t. There are differing opinions of whether you should define yourself by your Autism but it’s a massive part of my identity; looking back, I’m surprised I didn’t feel more lost.

ACCESS TO SUPPORT – Having an Autism diagnosis made it possible to get support, emotionally and financially. I’ve been able to get benefits, extra time on exams, flexibility in the arrangement of events, and so on. This has been so helpful and I’m so grateful for it. Of course I managed before but these things have made a great impact on my stress levels and have therefore made it possible for me to be more functional and more productive. And I’ve been able to enjoy myself where, before, I would’ve been paralysed by anxiety. None of that would’ve been possible without a diagnosis.

AN EXPLANATION FOR UNUSUAL BEHAVIOUR – Having ‘Autism’ as an explanation when people ask why I’m doing something a particular way or why I can’t eat a certain thing makes people a lot more accepting. While many people don’t understand Autism in detail, they do know that it can involve behaviours like these. For example, my family are much more patient with my food sensitivities than they were before the diagnosis because now they know where it comes from; they understood that I wasn’t being picky by choice, but because I was autistic. The focus has changed from putting myself through those tough experiences in the hope they’ll get easier to finding ways to help me manage them.

A CONNECTION TO OTHER PEOPLE WHO EXPERIENCE THE WORLD IN A SIMLIAR WAY TO ME – This is something I’ve only started exploring recently. For a long time, I needed to figure out how to be autistic, if that makes sense. I had to work out how to live with it, and adding more people into the equation was a bit too much to cope with. But now that I feel more together (at least in terms of the Autism), I’ve joined a group so that I can meet more people like me, i.e. similar age, gender, and diagnosis. This isn’t something that would’ve been possible without the diagnosis. And even though it’s so new, it has been really exciting. I’ve made some new friends and we’re having a lot of ‘oh my god, me too!’ moments which is surreal and wonderful and funny. Hopefully this is only the beginning of something.

BENEFITS TO MY MENTAL HEALTH – I cannot express how important it was to me to have my feelings and struggles validated, as they were when I finally got the diagnosis. Being believed was life changing. One of the theories as to why I developed Borderline Personality Disorder involves the continued invalidation I went through while trying to get answers for myself. I also had a lot of anxiety around the continued not knowing and I was severely depressed. Getting a diagnosis didn’t magically make things better but it was a huge weight off my mind. And it was movement; even if moving forward is scary, staying still is worse.

NEGATIVES

FEELING THAT THIS IS FOREVER – Pre diagnosis, there were many theories as to why I felt the way I did. But while I’d repeatedly flipped through those in my mind, I’d never really thought about what would happen after I got my answers. So while getting the Autism diagnosis was a huge relief and a generally positive milestone, I was still very thrown by all these other things that I hadn’t considered, and one of them was that Autism is a lifelong thing that I will have to deal with. When we thought it was depression for example, there was an end to it, the opportunity to recover. I know intellectually that although I won’t ‘recover’ from Autism and I will learn how to manage the difficulties, it did and still can make me feel very claustrophobic within my own mind. As irrational as it sounds, I’ve had moments where I’ve felt like, if I just tried harder, I would be able to break out of this ‘Autism prison.’ I swing back and forth on this feeling but, as you can probably tell, the positives of getting the diagnosis far outweighed the negatives for me.

I want to be clear that these positives and negatives are just from my experience. I know that many people have experienced stigma and have been badly treated because of their Autism but I don’t think I’m qualified to speak to those experiences. I don’t know what that feels like and I don’t want to speak for those people. So this is my experience. Hopefully it can be helpful.

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World Autism Awareness Week 2018

World Autism Awareness Week is here! This is a week that is dedicated to raising money and awareness around Autism and since I started this blog in August of last year, this is my first WAAW as a blogger. I wanted to do something a bit different to the usual programming so, this week, I’m going to post something Autism related every day. Hopefully these will be interesting and insightful for both those with Autism and those without. Let me know if there’s anything specific that you’d be interested in reading. I might not be able to manage it for this week but it’ll definitely go on the list to be written and posted soon!

For those of you who don’t know much about Autism, I thought I’d do a brief summary to ease you into the week.

Autism is classified as a developmental difficulty that affects how someone perceives the world and how they interact with others. It’s a spectrum condition so while all autistic people share areas of difficulty, they affect people in different ways and so Autism can have varying presentations; one person may dislike being touched and avoid eye contact while another may appear very sociable but be incredibly over sensitive to light and sound. Another may have both or neither. The first thing I was told after my diagnosis was that each autistic person is the expert in their own Autism because no one else can know it as we do. Every presentation is different.

One of the common analogies for Autism compares brains to the operating systems on computers. If every one else is a PC, autistic people are Macs; each system is sensitive to different things, programmes that are designed to do the same things look and run slightly differently, icons and folders are in different places, even the keyboards are different. This isn’t something you can change; as far as I know, you can’t reformat a human being… There’s no cure but then it’s not an illness. Having said that, a person can learn how to manage the difficulties of their own presentation over time, which can make them easier and less stressful to deal with. Some may need more support than others, especially if they have additional needs like a learning disability or mental health issue, both common with Autism. We still don’t know what causes it (although we do know it isn’t vaccines) but research is being done and currently shows that there are many factors at play, including genetics, the development of the brain, and the environment.

As previously mentioned, there are specific areas of in Autism that people struggle with to varying degrees:

Struggling with social communication is the most well known difficulty in Autism. Some autistic people may not speak at all or may have limited speech; some have excellent language skills. Many find it hard to understand jokes and sarcasm, interpret facial expressions and tone of voice, and make sense of abstract or figurative language. These things can make a conversation confusing and overwhelming, and many autistic people need time out after socialising to recharge. When the expectations in a conversation seem unclear or the emotions of others hard to understand, an autistic person may talk at length about themselves or something they’re interested in because these are things they know and feel confident talking about. Rather than being insensitive or rude, it’s very often an attempt to connect with others while navigating a very complicated situation. It often feels like everyone else has read a rulebook on life that you were never given which can feel very isolating.

Change can be very difficult for someone with Autism; the world can feel very confusing and unpredictable and so many autistic people prefer to have strict routines to control that anxiety. This can mean eating the same food over and over again or adhering to a specific timetable throughout the day. When there’s a change in plans, an autistic person may need time beforehand to adjust their thinking. Rules are also important and they can feel difficult or even impossible to break away from, even if someone in authority has said it’s okay.

Another of the better-known characteristics of Autism is that an autistic person may have a very intense interest that is apparent from a young age. Sometimes they change but sometimes they’re life long, anything from a particular instrument to the mechanics of aeroplanes. Of course, a person without Autism can be very interested in these things but it’s the intensity that’s different: an autistic person may find it difficult to think or talk about anything else and may pursue it to the exclusion of everything else. These interests are vital to the autistic person’s happiness and wellbeing and so it can be massively helpful if that interest can be channelled into a related job, area of study, or hobby.

Many people with Autism have difficulty processing their environment and can quickly become overwhelmed by light, colour, smells, and so on. Personally, I particularly struggle when I’m surrounded by people: there’s too much information to potentially take in, from their names to favourite foods to the films they hate. Experiences like this can cause severe anxiety and coping with that anxiety can manifest in lots of different ways. Some people chew their nails, some have panic attacks, and some display behaviours like rocking or banging their head against something; these repetitive, familiar actions can help to shut out the stressful stimuli and keep that person calm.

It’s also important to note that there can be dramatic differences between men with Autism and women with Autism. The statistics have always said that there are more men with Autism but it’s starting to become apparent that it is massively under or misdiagnosed (as anxiety or Bipolar) in women because they often present in ways that are very different to what is commonly regarded as Autism. They may seem to socialise effortlessly and show no disruptive behaviour but this seems to be because women are somehow able to mimic ‘normal’ behaviour; plus there is still significant societal pressure on women to be polite and to avoid causing a fuss or drawing any negative attention, which has most probably contributed to this. Instead they commonly experience serious anxiety in social situations, struggle with overwhelmingly strong emotions, and their focussed interests may be things that girls and women would already be interested in, such as a TV series or a hobby like make up or reading, which means they’re not automatically recognised as a sign of Autism.

I intended for this to be a short post but, again, it’s become quite long. Whoops. So with that said, I will leave you with some useful links and The National Autistic Society’s video for this year’s National Autism Awareness Week and Too Much Information campaign. Funny story: I actually applied and then auditioned to be in this film. I didn’t get it (obviously) but it was a really awesome experience and I would definitely love to work with them on another project in the future.

They described the idea to me during the audition and it’s turned out so well. I can definitely relate to the experience depicted.

Useful Links:

I also recommend checking out any local Autism charities, support networks (Facebook is a good place to look – type in the name of your town and ‘autism’), and services. These can make a really big difference in the day-to-day life of an autistic person.

See you all tomorrow!