What is Autism?

So here we are, post number 5! I am overwhelmed with the response that these posts have had. Over 500 people interacted with the posts which is more than I can ever imagine. I feel so lucky to be able to reach out to so many people so wanted to use this weeks post to tackle the question 'what is autism'. I hope this is a helpful read for those who don't have a huge amount of prior understanding about autism!

Like many things autism has a diagnostic criteria that those with a diagnosis will have meet however how much of this I see in myself is questionable!

The DSM-5 (Diagnostic and Statistical Manual of Mental Disorders) is a guide used by clinicians to define and classify mental disorders to improve diagnosis, treatment and research. The DSM-5 defines autism as 'persistent difficulties with social communication and social interaction' and 'restricted and repetitive patterns of behaviours, activities or interests including sensory behaviours' 'that limit and impair everyday functioning*' 

When reading this definition it feels like a very generic and stereotypical presentation of autism. I can't emphasis enough how much Autism is a spectrum, it covers everything from those with very visible needs, who may not be verbal, may have little independence, etc though to those who manage independently and are more like ducks in water, very calm on the surface, looking like everything is okay and underneath their brain is working at 100mph. 

These ducks are often the people who I feel are overlooked when we think of the term autism. I am a duck. To the average person I meet I look as though I am coping well, independent and need very little support. However, under the water I am dealing with constant sensory overload, information processing and social communication challenges. It is exhausting. I want to explain what autism means to me.

Using the DSM-5 definition and information from the National Autistic Society** I want to talk about autism within six areas:

1. Social Communication/ Interaction Challenges
2. Repetitive or Restrictive behaviours
3. Hyper or Hypo Sensitivities to light, smell, touch etc
4. High focus on special interests
5. High levels of anxiety
6. Meltdowns/ Shutdowns

1. Social Communication/ Interaction Challenges

I struggle with understanding some verbal and non verbal communication. For example, understanding sarcasm, inference, idioms, facial/ body language. Girls with autism are known for having a good ability to be able to mirror and mask. This means we have a great skills at observing our peers and reflecting this to our own behaviour. This can make autism really hard to diagnose in girls. On the outside in a room of people I look like I fit in perfectly but I feel along way out of my depth. This ability to mirror verbal and non verbal communication can add to the level of exhaustion a lot of us feel. I often worry that I come across as anti social. I often will get to the evening and just want to be alone. I may not be physically tired and ready for bed but I know that by about 9pm I am mentally exhausted and that my way to cope is to be alone. This takes planning, if I know that I have a day planned where I will be around people a lot (e.g. a day a work) I know that I need to take a time to allow myself to re-charge. This can be really hard being in my young 20s, a point in life when I am meant to be social and enjoying evenings out with friends. But hayho!

Those that know me know that I am quite a sarcastic person, despite this I find it really hard to understand myself. Throughout my teens I found this really hard. I often took things really to heart and them doubted if someone was still my friend. This was quite a hard thing for me and my friends. I constantly doubt myself 'have I upset X'. I allow this to get me quite down and begin to feel very anxious until I ask that friend, 'have I upset you'. 99% of the time the person will respond with 'no not at all' and I have misread a situation however to this date this is something that I continue to struggle with. 

2. Repetitive or Restrictive behaviours

The world is a place that is unpredictable and uncontrollable and this for me is very stressful. I find change very stressful and a sudden break to routine can leave me feeling very anxious. 

I think this section breaks down quite nicely into two sub sections: 2.1 Wider World and 2.2 My World.

2.1 Wider world: Being in my young 20's I feel I should be a free sprit, enjoy being spontaneous and making the most of not being tied down by children etc. This can make me feel like a really stand out. I LOVE my diary and the nurse in me goes by if its not written in the diary it isn't happening. This is great as I am a predictable person but also can feel like a noose around my neck. Sometimes I would like to just be able to go out for dinner with friends last minute and I am getting better but definitely still struggle and feel very anxious when it comes to last minute decisions.

For others on the spectrum something really enjoyable such as their birthday or Christmas can be enough to trigger meltdowns as it is a change to routine. This can make life really tough for both them and their families. feeling trapped in this fish bowl seeing everyone else enjoying these events but really struggling to themselves. 

2.2 My World: I need to self soothe! Repetitive movements can be a really calming thing. I like to bounce, one of my favourite things to do when overwhelmed and stressed is to sit on my platies ball. The rhythm of bouncing is so soothing. I like any movements that are repetitive. I find walking very calming as again it is a rhythmic movement that allows me to calm myself. I really struggle to sit still, even when lying in bed I will be bouncing or rocking my legs, wiggling my toes just something to get some sort of sensory feedback. This can make it really hard for me to just rest, I am constantly on the move! 

For others self soothing can look like rocking, spinning, hand flapping etc. These all preform the same purpose. I feel very aware when self soothing, I am aware that it isn't a normal thing that will help me fit in but at the same time my body needs it to be able to regulate itself. 

3. Hyper or Hypo Sensitivities to light, smell, touch etc

Many people in the autistic community experience senses in a different way to the rest of the world. The five senses commonly known taste, smell, touch, taste and sight can be over or under sensitive. The same reaction may not be had to each sense, for example for me I have a hyphened sense of smell, I am like a sniffer dog. I can find perfumes very overwhelming and in some places smells can make me feel physically sick. 

However when it comes to touch I am under sensitive, I need more stimulation that others. I like weighted blankets to have the feeling of closeness, I like the sensation of 'messy' textures - mud, slime etc. A bare foot walk to me is heaven, to others would be a sensory overload and they can't bare having dirty hands or feet!

This means that I live in a very sensory orientated world. Managing the need to please some senses and protect others from becoming overwhelmed.

Alongside the commonly known 5 senses we all have another 2 that are less known; Vestibular (balance) and Proprioception (spatial awareness). These vestibular sense means that activities like rocking and bouncing are soothing, it can also cause problems with sports, travel sickness . While proprioception may look like not knowing understanding personal space, bumping into things etc. On the other hand it can be needed to have weighted blankets etc to know the space your body is in, some autistic individuals also like to hid in small, dark, contained spaces.

  

4. High focus on special interests

Autistic people can be stereotyped for being highly intelligent and having incredible knowledge about particular topics. While I would like to say this was true of me, its not! I do get fixated on particular topics. This makes me a dedicated student. If there is an option to do more research into a particular area I will delight in making PowerPoints and flashcards and do like to tell people about what I have learnt but am also aware that this can be annoying!! Being very task orientated is not a bad thing it makes autistic people very employable etc but can also be a really tricky thing as it means I am a perfectionist and can be very hard on myself. 

5. High levels of anxiety

I think this kind of explains itself and I have ended up touching on it in a number of other sections. The management of social interaction, sensory overload, information processing, spatial awareness etc. I don't think it needs much more than that!! Autistic individuals are more vulnerable to mental health struggles such as depression and anxiety***. This isn't helped as mental health services aren't designed to meet the needs of autistic individuals, therapies such as talking therapies aren't best suited for those with social communication challenges! This sadly means it is underdiagnosed and miss managed. Despite this things are changing and more is being invested into research in this area.

6. Meltdowns/ Shutdowns

When feeling overwhelmed autistic individuals may go into a state of shutdown. This was explained really well to me thinking about a computer. If you were to ask a computer to open 10 files, play music, play a video and then try to google something it is likely to slow down or even come to a halt and freeze! This is very much the same for autistic individuals, our brains are asked to do so much that we when slowdown and shutdown! 

In children this can be mistaken for temper tantrums and parents can be judged as poor behaviour management. This is something I would often do as a child and would have physical meltdowns throughout primary school. I would be able to keep myself together when out and about at school etc but then when I get home this is when I would lash out. I can't imagine how hard this was for my parents but to any parents out there reading this. The reason you get the brunt of this is because we feel safe and relaxed with you! 

As I have got older these meltdowns have turned more into shutdowns. I get into a place where I cant process any more information and this leads to me being locked inside myself. Often the best ways of managing this is to be alone, this allows me to regulate my body again. 

Weather a shutdown or meltdown the most helpful thing you can do is stay away. It may be the individual needs someone present to help keep them or others safe but staring, constant questioning, attempts at comforting will not help! 

Well I am aware this has ended up being quite a long read so if you have made it to this point well done!! I really wanted to paint a picture as to what autism really was, starting to break down some of the stereotypes and misconceptions out there. As I said at the start Autism is a spectrum and each individual sits in a different place. This means the only way to understand what autism is to them is to ask them or those who know them closely. For those at the start of the diagnostic journey this can be really hard as you are only just starting to be aware of what autism is to you but I personally think we are quite self aware and when given a way to communicate it we know ourselves pretty well!!

I hope this has been helpful, I have put links bellow to some things that I have referenced which are worth a read! If you are interested I knowing more the NAS website is a great source of information! 

References:

* Diagnostic and Statistical Manual of Mental Disorders: DSM-5, 5th edition. American Psychiatric Association (2013). 

** National Autistic Society: www.autism.org 

*** Autism and Mental Health: www.autism.org (Autism and Mental Health) & www.mind.org.uk (Mental health of people with Autism)