The Invisible Daily Struggle

Most people don’t know I have autism. More people know my children have autism and I’ve lost count of the number of times I’ve heard things like “Oh, but he’s very high-functioning isn’t he!”. They sometimes go on to list all the famous people who were “autistic” – Einstein, Mozart, Warhol. There’s currently a general movement to portray disabilities more positively as “different abilities”. There was the “Not Special Needs” campaign focusing on people with Down Syndrome, the premise being that everybody has the same basic human needs. Following his recent documentary, Chris Packham posted on his blog: “For all autistic people it mustn’t any longer be about what we can’t do, it’s got to be about what we can do.”

I certainly agree that for any person (with or without a “disability”), the way forward is to focus on and work with their strengths.  I definitely don’t want anyone to be written off because of a label. At the same time there is a risk that in this celebration of the positive, we lose sight of the challenges that people with autism and their families cope with day in, day out, the majority of which go completely unnoticed.

The thing about people with Asperger syndrome/high-functioning autism is that we tend to have an unbalanced skill profile. Brilliant at maths, but can’t tell when he needs the toilet. Can concentrate for hours on a topic that interests her, but can’t focus in class. Inspirational public speaker, but feels out of his depth at a pub social. Fantastic organisational skills at work, but can’t manage to keep the house clean and tidy. The high-functioning part is what the world sees. The less-well functioning part tends to hide behind closed doors.

The other thing is that some days we can cope better with our autistic traits than others. If I am generally under stress, then I just don’t have the energy to manage conversation, I don’t have the strength to enter a noisy supermarket, I can’t make simple decisions, such as what to have for lunch. Because every day these little things that other people might take for granted need a lot of focus and mental energy. As an adult, you don’t get a diagnosis of autism unless your autistic traits “limit and impair everyday functioning”. I’d spent my whole life castigating myself for making such heavy work of things that other people seemed to find a breeze. It was a sweet relief when I realised that there was a reason for it.

I’ve spent a lifetime trying to blend in. If I’m managing my autism well enough to be out in public, then you won’t know it’s even there. If I’m not managing it well, you won’t see me. I’ve learned how to handle this with the children too. We rarely have any meltdowns in public, because I don’t take them to places which are low enjoyment and high stress (e.g. supermarkets, hairdressers). Before we go anywhere that’s high enjoyment, high stress (e.g. swimming pool, park), I quickly asses whether or not they will cope with it in their current emotional state. Sometimes you have to forge ahead with plans, but we always make sure there’s an escape route, a chance to bail out. Sometimes that entails swiftly removing the child from the situation before they’re beyond their ability to cope. Sometimes it will involve shoving a tablet in front of them with their favourite game playing, so they can zone out. My husband and I rarely go anywhere with the children on our own, because often the escape route needs two of us in order to keep everyone safe.

This is why I believe that we DO have special needs. When we go to theme parks, we wouldn’t manage the queues without a fast-track pass, because the queues cause too much uncertainty and anxiety. In school we need teachers to be patient if we take a while to process things, we need movement breaks, we need someone to help us focus sometimes. At work we need a desk that’s not right next to the door, in an office without flickering, buzzing lights, we need adequate notice about meetings, we need to be given the freedom to do things the way we know will work for us, rather than trying to squeeze ourselves into someone else’s mould. We need to be allowed to communicate by email and text message rather than by phone or face to face. We need friends who will understand that cancelling at the last minute is a major incident, that we’d rather chat one to one rather than meet as a group, that sometimes we might just not want to talk at all.

Not every autistic person will need all of these things, and there are many other different needs I could mention. We’re all individuals, but the fact that we have an autism diagnosis means that our needs significantly impact our lives. Yes it’s “got to be about what we can do”, but for many of us, this will only be achievable when allowances are made for that which we can’t do.

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On Being a Child With Undiagnosed Autism

Recently I had a bit of an empathy “fail”. One of my work colleagues confided in me that his 8 year old daughter had just been diagnosed with autism. The awkward pause following my enthusiastic and positive reaction to this news was my clue that I’d messed it up again. I went on to explain to him that if you’re autistic then it’s so much better to have a diagnosis than not.

I do understand that receiving a diagnosis of autism for your child is a very mixed bag of emotions. When my two were diagnosed at 5 and 7, I found it quite overwhelming to realise that they were never going to “grow out of it”.  As it happens they have both developed in ways I would never have taken for granted, though possibly this has been because of, rather than in spite of, their diagnoses.

Having a diagnosis has meant that they have been entitled to extra help at school. We’ve had to fight for their needs to be met at times, but diagnosis is proof that those needs are not just in our imaginations. Because they have a diagnosis, many of their teachers have been very understanding of the reasons behind behaviours which would not normally be acceptable. The diagnosis has also meant that they have been able to access groups and activities specifically for children with autism. They’ve had the opportunity to connect with others who experience the world in a similar way to them.

Back to my work colleague. The reason I reacted in such an overwhelmingly positive way was, I think, because I wasn’t empathising with him, but with his daughter. In this exchange, I was not the parent of autistic children, I was the autistic person, and I was so happy that this little girl had been given this gift that I had had to grow up without.

I remember my early childhood as a big cloud of confusion, noise, busyness, awkwardness, misunderstanding. I didn’t have a clue what was going on. I didn’t understand why people got angry with me (which happened frequently). I tried so hard to do things the right way, but a lot of the time it turned out I’d got it wrong.

In certain situations I couldn’t speak. I remember feeling completely frozen, and the more coaxing ensued, the harder it became. It was assumed that I was making a choice, that I wouldn’t, rather than couldn’t. Nowadays it’s called selective mutism and is classified as a severe anxiety disorder. Back then it was called “being difficult”.

I was generally “a difficult child”. I also had motor difficulties, which meant I was clumsy. (My eldest has been diagnosed with dyspraxia.) I was tall for my age, which meant I stood out. I was very socially awkward, not understanding how to navigate interactions with other children, and often ending up in trouble for hitting out. Sometimes it was just that they got in the way of my flailing, uncoordinated limbs, other times something seemingly insignificant would send me into an uncontrollable rage, because to me it was vital.

As I got older, it didn’t get any better. True, I did gradually start to figure out how some things were supposed to work. But mainly I just withdrew into myself, because trying to interact with the world mostly seemed to end in disaster. I found that swimming was good, because nobody tries to talk to you when you’re ploughing up and down the pool. Music was something else I enjoyed. Choirs, bands and orchestras gave me that sense of being part of something beyond myself, but being part of it didn’t rely on the sorts of communication I found difficult.

I used to read as if my life depended on it. I’d read anything I could get hold of, from the shelves at home, the school library, our local library. This voracious reading habit served two purposes. On one level it allowed me to escape from a confusing world with infinite possibilities, into a world which followed a straight path, a world which in many ways was predictable. I loved Enid Blyton. Sometimes criticised for being rather formulaic, I think that’s exactly what I treasured. The stability, the predictability, the certainty that good always wins. On another level it equipped me to understand that confusing world a little better. It taught me about interactions, motivations, relationships and reactions.

This was the positive. Growing up, learning how to work round the things I found difficult, finding my own ways of interacting with the world. The problem was that me being “me” was unacceptable to other people.

At school I preferred to spend time on my own. That was my choice. But then the bullying started, an easy target because I didn’t have any backup. It was mainly verbal, because I could easily defend myself physically, but verbally I was hopeless. I was made to feel that I had brought it upon myself by choosing to spend time alone rather than working on friendships.

Teachers also objected to me being me. Academically I was good, I loved nothing better than an exam where I could sit in silence and exercise my brain without being disturbed. But in class I didn’t join in discussions, I didn’t put my hand up if I knew an answer, if asked a direct question I would just mumble. A handful of teachers valued my strengths, but mainly it was assumed that as I was clearly very intelligent and academically able, there was no reason at all I should find something so simple as verbal communication difficult, and I was clearly not making enough effort.

My formative years were spent in an internal battle. Half of me wanted to be true to myself, doing the things I knew made me feel better. The other half was desperately trying to fit in, to please other people, to do the things that they told me would make me happier. Obviously this was not conducive to good mental health, and I struggled a lot with my own identity. Self-esteem, self-respect and self-belief, all undermined by people who were trying to help in their own way. (This battle continued far into adulthood, but that’s for another post.)

This is why I was so happy for that young girl who was given the gift of an autism diagnosis. Yes, she will probably always find it difficult to navigate life in a world which is set up to suit people who don’t have autism. But she will be able to face those difficulties with the benefits that my children have found – support and understanding from others, opportunities to connect with people who get it.

Most importantly though, I hope that the diagnosis will allow her to grow up into a deeper understanding of herself, learning who she is and how her brain works, confident in her identity, and knowing that it is absolutely, one hundred percent, ok to be her.

Why Autism Makes Mental Illness More Complicated

Mental health problems generally go along with being autistic. Anxiety is pretty much constant. In fact it took me until I was almost 40 to realise that I even had generalised anxiety, because I could never remember not feeling like that. I guess I just assumed everyone else felt the same way. I thought I had social anxiety. Now I know I’m autistic I don’t think I actually do. I just don’t thrive on social situations, and they’re pretty challenging and tiring. People are complicated. Why on earth would I want to be sociable? Social anxiety is not my problem, it’s part of who I am, and now I know who I am I can manage the social side of life a lot better.

What I really wanted to talk about though was depression. Again, depression has been there for pretty much as long as I can remember, and even before I was diagnosed as autistic I’d accepted it was always going to be a part of my life. However, depression did come and go, so unlike the anxiety I could differentiate between times I was depressed and times I wasn’t. Or at least between times I could cope with the depression and times I couldn’t.

Autism is a communication disorder, which means we don’t communicate the way people expect us to. (Disorder doesn’t mean there’s anything wrong with it – but just that it doesn’t match normal expectations.) The biggest problem I found with having severe depression was that I couldn’t communicate that. I would go along to the doctor, and with a completely blank face and matter of fact voice, even with a smile, would explain that I was feeling completely desolate and couldn’t cope any longer. In fact I often cracked jokes, as that’s one of my main tools for easing social discomfort.

The fact of the matter is, that in people with autism, their facial expression often doesn’t match what’s going on inside. I’ve experienced this with my own children, two of whom are autistic, and this helped me to finally figure out why nobody was taking me seriously.

The trouble with people not taking you seriously is that when you realise that you’re not getting through, then you try to come up with other ways of communicating. For me this was taking non-lethal overdoses, self-harming in obvious ways, turning up at A&E in the hope that someone would realise how desperate I was. It didn’t work. Eventually they decided I had borderline personality disorder – in simple terms this is a disorder where you are terrified of being abandoned and do anything to try and get attention and affection. This really doesn’t fit someone who has spent their whole life trying to get people to go away so she can get some peace and quiet and just get on with stuff without interference.

To be fair, there is some overlap. Intense relationships – true enough I did used to obsess over people a little, but only because that person was my special interest. You know how when you get interested in a subject you want to know everything about it, to understand it completely? Well at various stages that level of interest has been directed at people. In a romantic context, that level of commitment and interest is often appreciated, particularly in the early stages. However, in BPD, these relationships are also unstable, and manipulative. I’m quite proud of the fact that years later I am still friends with all my exes, several came to my wedding, two of them are godparents to my children. Even when the obsession wore off there was an underlying friendship which has endured. Not what I’d call unstable.

And then there’s the empathy thing. Apparently people with BPD lack empathy. Now despite a common misconception, people with autism often don’t lack empathy at all. I can only speak for myself, but I almost have too much empathy. What I lack is the ability to know what to do with it, or to communicate to the other person that the empathy is there. Sometimes I want to reach out and soothe the pain that I can feel in the other person, but I am paralysed by not wanting to make a social faux pas, as my life has been a long series of them. I can’t find the right words, because I know that no words can take away the pain, and so I don’t use any words, and I suppose people assume I don’t care.

It’s true that on occasions, when I’m completely engulfed and overwhelmed by my own emotions, I don’t make the effort to think about how everyone else is feeling, I just plough on with what is going to get me through to the other side. But isn’t this true for everyone?

Facial expression and tone of voice become a problem again. Because my face and my voice often don’t match how I’m feeling inside. And the more emotional you feel the harder it is to fake it, so if I’m feeling someone’s pain then I end up saying some awkward words with a smile and a cheery voice, and it’s probably not all that comforting. But it doesn’t mean I have no empathy. It doesn’t mean I’m not feeling it.

Incidentally some of my closest relationships have been forged over the internet, and I have helped some people through some really tough times from the other side of a computer. The freedom that comes from being able to communicate without my voice and my face coming into it, with being allowed to have time to process the words and the feelings, and come up with an appropriate response. It was a revelation, and it was how I learnt to truly connect with people.

Anyway, back to mental illness. So I got labelled with BPD, and suddenly there were no mental health services available to me. The only thing they could offer was a group therapy. Pretty much my worst nightmare, but I really was desperate at this point so I went along with it. And it actually wasn’t so bad, when people are completely at the end of their tether they really don’t give two hoots about someone being socially awkward and saying the wrong thing. It was actually rather liberating.

So eventually, I got an autism diagnosis. But guess what – still no mental health services, as having autism made me too “complicated”. (From this side of the fence it’s the other lot who are complicated, we who have autism are far more logical and straightforward).

What I’ve learned is that nobody else is going to look after your mental health for you, so you’d better do everything you can to look after it yourself. I now spend one day per week entirely on my own in an empty house, because for me that’s a state of minimal anxiety. I need to take that time out from anxiety each week for my brain to recover from the constant onslaught of stress related biochemistry.

I limit the amount of social interaction I have each week. I make sure that wherever possible I have a day off between big events such as meetings and social events.

This has been life-changing. My mental health has vastly improved. But it’s also a little worrying because I won’t be able to go back to full time work and maintain this level of self-care. I don’t think I’d be eligible for disability benefits because I’m healthy. Though the only reason I’m healthy is because not working full-time gives me the flexibility to do what I need to do to stay healthy.

It’s been a bit of a meander through my head, but I hope that everyone can take something from this that will help them understand themselves or someone they love better.