My thoughts on World Autism Awareness Day

Today marks World Autism Awareness Day. Over the past couple of days, I have noticed a lot of my Facebook friends have changed their profile pictures to represent this. Here are my thoughts on the whole concept of Autism Awareness Day.

Personally I feel awareness of autism is actually pretty high. What is lacking, in my humble opinion, is understanding. Most people I have come across have heard about autism, seen documentaries on it or known someone on the autistic spectrum. What a lot of people struggle to do is realise that every single individual who is on the autistic spectrum is exactly that-individual. My own experience of my autism is completely different to the experiences of the people I have worked with in residential care over the years. All of us suffer from stereotypes. People like myself are often dismissed and told that we cannot have autism because we are able to communicate verbally (even though to do so a lot of the time is extremely difficult and stress inducing) and have formed close relationships. People who have a learning disability alongside their autism are often assumed incompetent and this is what leads to a lot of challenging behaviour. How frustrated and angry would you be if people never thought to seek your opinion on something because they believed you had nothing to say because you communicate through other means, rather than verbally? Both ends of the spectrum and everything in between need a lot more understanding.

People also need to understand that autism is extremely complex. We may be able to do something one day and then, the next time we attempt to perform exactly the same task, it fails because our brains just can’t process it at that particular time. I have noticed that it is this particular trait of mine that has the tendency to annoy people the most. People don’t seem to get how I can be able to do something one day and not the next. I don’t blame them, to be honest, as I struggle to understand it myself a lot of the time. It took me 30 tries to be able to fill in a paying in slip for the bank-I was equally as frustrated as my mum at the end of it. Please don’t shout at us if we are not able to do something we have done before. Please understand that our processing system struggles sometimes, particularly if we are tired or anxious and, for me personally, knowing that someone is getting frustrated with me makes me anxious and thus even slower.

I also feel that, while World Autism Awareness Day is a good thing to have, what we should aspire to be as a society is one which is so understanding of people on the spectrum that we don’t need our own day to educate people because everybody already has an understanding. I believe we are closer to achieving this goal all the time. Blogs like mine have a part to play in this. I have always believed that you cannot moan about someone’s ignorance on any topic unless you have done your best to educate them on it. Yes sadly there will always be people who, despite education, remain ignorant but the majority of people are decent human beings and are receptive to education. I have been thanked so many times from people who have read my blog and said that it has taught them so much about Aspergers, although, as I always remind everyone, we are all individuals with our own traits, hopes, dreams and fears.

I wish everyone a Happy World Autism Awareness (Understanding) Day. I hope this blog post goes some way in helping to promote understanding.

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Isolating Aspergers versus accepting Aspergers

In my years of living with Aspergers, I have come across a plethora of attitudes towards the condition, both from people on the spectrum and others who have varying levels of experience with the condition. One aspect of attitude towards Aspergers is whether or not you isolate it or accept it as part of you/the person with Aspergers you know. Isolating it is a term I use, rather than a generally recognised one. What I am referring to is treating Aspergers as a separate entity, something that can easily be distinguished from one’s personality and, as a consequence, usually something that is easy to blame when things go wrong.

I am the first to admit that, depending on my mood, I swing between isolating Aspergers and accepting Aspergers. During a highly emotionally charged meltdown, I once even posted on Facebook that, if my Aspergers was a person, I would punch it in the face. However, once I had calmed down the next morning, I could see that this strength of feeling had been impulsive and provoked by the meltdown I had been in the midst of. The simple fact is that Aspergers is a significant part of who I am-always has been and always will be. Yes I sometimes wonder what I would be like if I didn’t have the condition but, as I have gotten older, that has decreased a lot because I realise that it is a somewhat pointless exercise because, no matter how many hours I sit there wondering how different I would be if I didn’t have Aspergers, my neurological makeup and the way my brain is wired is not going to change. It influences the way I think and the way I perceive language every day which is why I consider it a significant part of my life and why, when I am emotionally stable, I accept it.

I often find that accepting it is the happiest option. When you can accept Aspergers as part of what makes you you, it becomes one less battle to fight. We have enough struggles in life without being constantly at war with our brains. I also think it’s important to remember that everybody faces their own issues and struggles in life, whether they are autistic or not. Try not to blame everything on Aspergers, which I have seen some desperately unhappy people do. I suppose that brings us to one main point in all of this-depression makes it so much harder to accept Aspergers as part of your life. I have often found that, when people list why they would want to be cured from their condition, the things they list are often associated with depression-an overwhelming sense of hopelessness and despair. Depression is something I would say, from experience, a lot of people on the spectrum struggle with. The world favours sociable people and most of us are not all that sociable. Plus we see the world differently and the way we view the world is not usually catered for. If it was, certain noises, sounds, smells and textures wouldn’t exist and it wouldn’t matter if people looked at you when they were talking to you or not. I have often found that, with other people on the spectrum I know, once the depression is under control, their outlook on Aspergers is much brighter. It’s the depression that needs to be treated.

Aspergers is not a monster or a demon. It is simply a different neurological makeup. It brings unique strengths as well as weaknesses. Yes, if I didn’t have it, I might be a bit more sociable and a bit less socially awkward but I might also have lost my ability to speed read, which I have always found to be a real strength. The truth of it is that I can’t tell what I would be like because Aspergers is so intertwined in my life that I can’t tell which aspects of my personality are down to Aspergers and which aspects I would always have had. What I guess I’m trying to say is does it really matter? I am not against self improvement but there is a difference between wanting to be the best you can be and the type of self hatred that I see all too often in the autistic community. I often find we bully ourselves more than anyone else has ever bullied us. Sometimes I find that evaluating the situation logically is the best way forward. Yes we have our issues but everyone does, whether autistic or not-their issues may be different but they still have their battles to deal with. Our lives would not suddenly be perfect if we woke up one day and our condition had vanished overnight. Everyone has little blips now and again but, if you feel like you hate your condition all the time, please seek help as it is most likely influenced by depressive thinking which DOES need treating. Remember the positives and remember your strengths-everybody is unique and the world needs all different types of minds.

A book that’s worth a read!

I know it’s been a while since I last posted and I apologise for that but I’ve been so busy recently. I have been keeping up with people’s comments though. I love to know what people think of my blog so it’s always nice to receive comments, especially when I know that the blog has helped someone to accept their diagnosis or to realise that they are not alone in experiencing a certain trait.

A good friend of mine, who also has Aspergers, has written a book primarily aimed at professionals in the education sector who work with children on the spectrum. The link is here

http://www.lulu.com/shop/angela-goodwin/how-to-teach-autistic-children-more-effectively-using-educational-psychology-and-my-own-experiences-and-knowledge/ebook/product-22522601.html

This book deals honestly with the issue of teaching children on the spectrum in a way that motivates them to learn. Obviously every person on the spectrum is different but, sadly, a common theme among children with autism, particularly those in a mainstream environment, is underachievement in an educational setting. I have met many incredibly bright people on Aspergers forums who dropped out of school because they struggled to keep interested in what they were being taught.

Of course, people who aren’t on the spectrum can also become disillusioned with school and drop out before completing their education. Learning in a mainstream environment can be tough for lots of people, including those with no neurodiverse diagnosis at all. I have 2 close relatives who are teachers so I know just how hard they work and how they differentiate to take into account the needs of every child in their classroom. This is by no means an attack on teachers. I simply think that the more good resources there are out there for people teaching children with autism the better. I also think that learning from someone who is on the spectrum themselves is the best way, hence why I set up this blog two and a half years ago. I cannot fault most of the professionals that specialise in the autistic spectrum and they do bring a much needed awareness and understanding but I always think it’s best to get advice from somebody who lives with that mind and has grown up with those traits.

I hope the book is helpful for people. Please let me know what you think if you do buy it so I can pass the feedback on to my friend. Thank you everyone!

2016 will be a good year!

I have a great feeling about 2016. Great things are ahead-my wedding to my gorgeous fiancé takes place in July and, hopefully, shortly after, another move to a permanent house this time.

As it will be a very busy year for me, I probably will not be able to blog as regularly as I have been but I will continue to blog whenever I can as I have learned so much through blogging and I appreciate all my readers for taking the time to read my blogs. I continue to hope that my tales of my experiences help other people who either have Aspergers themselves or have a relative or close friend with the condition or those who just simply wish to learn more about the autistic spectrum and the various conditions on it.

I hope that 2016 is a good year for each and every one of my readers. If you are feeling low, remember that better times are ahead. Last summer, I had hit a low period but look at me now-engaged and loving my new job and new flat! Positive things are always ahead, often when you least expect them!

I hope that, this coming year, understanding of autistic spectrum conditions continues to increase. A lot of people are aware of autism and its variants but there is still a lack of understanding as to the impact these conditions have on the people who live with them. Over the past couple of years, since I started blogging myself, I have noticed a significant number of people on the spectrum who are telling their own stories and offering advice to those who are new to the autism world. I really hope that this continues and that more people take it up as I firmly believe that, the more it is spoken about from a personal perspective, the more society will understand just what living on the autistic spectrum involves.

I wish everybody a happy and healthy 2016!

When Santa makes everything right in the world

As it’s almost that time of year again when Christmas Day is upon us, I thought I would share a heartwarming example of Santa interacting with a little boy on the spectrum. Some, perhaps even many, kids on the autistic spectrum struggle with Santas Grotto visits due to the overwhelming sensory stimuli most grottos contain. They may reach the man himself and be unable to communicate with him either because they are pre verbal or because anxiety and anticipation has rendered them mute. Having an understanding Santa Claus makes all the difference!

This story centres around a six year old boy with autism who, having seen Santa in his grotto in Grandville, Michigan, turned back and, hands shaking with anxiety, told Santa that he was worried about being put on the infamous Naughty list because of his autism and the effects it has on his behaviour, particularly at his school where his diagnosis is poorly understood. Santa calmed him down and reassured him that he was a good boy and that he shouldn’t be afraid to keep being himself. The full story can be found at http://www.today.com having been published on the 9th of December 2015. This story made me smile but also made me sad that, at such a young age, this boy is already experiencing low self esteem and anxiety about how other people see him. Sadly, these are emotions and feelings that most people on the spectrum struggle with throughout their lives. Kindness can so often make all the difference and it clearly helped this boy feel that autism does not equal naughty. I hope that he takes that lesson forward with him through life and can recall it whenever he hits a down day. Santa Claus in that mall did more for that boy’s self belief in one brief conversation than his school appears to have ever done.

Of course there are countless other Santas in grottos throughout the world who also make every child’s visit special and memorable, including those with autism and other disabilities. The above news story has perhaps been played out several times over the years in different locations with different Santas and different children. My point is that experiencing such understanding and compassion can make such a huge difference to children on the autistic spectrum who so often feel an intense guilt purely for being themselves (I know this view may not be popular with some people who play down the negatives of living with an autistic spectrum condition but, based on my own past and through conversations with other people on the spectrum, it is a common occurrence). Finding someone who can look past the diagnosis and appreciate them for every aspect of their personality is what can make the difference between isolation and deciding to join in, in my opinion. Santa gave this boy the confidence to be himself, something which at such a tender age, he felt guilt for.

I will not be blogging now until closer to New Year so I want to take this opportunity to wish all of my readers a merry Christmas. I hope the festive season, for those that celebrate it, is filled with fun, family, happiness and laughter and I will be back just before New Year!

 

Autism And Bullying

This week has been Anti Bullying Week in schools here in the United Kingdom. I therefore figured it would be timely to write a blog about autism and bullying. I have touched on bullying in other blog posts but it is such a huge issue that I felt it also deserves a blog post of its own.

In the recent publication by the National Autistic Society “B is for bullied”, estimates are that over 40% of children on the autistic spectrum have been bullied at school. My guess is that that estimate accounts for pretty much every child on the spectrum who was educated in a mainstream environment but I can’t be sure. The report details ways in which children with autism are excluded and belittled and the dreadful effects this can have on them, including attempting and committing suicide. It makes tragic but honest reading. I cannot do hyperlinks on my IPad for some reason so, if you are interested in reading the publication, Google autism and bullying National Autistic Society and it is the first link on the search results page. Of course, those statistics are only for the UK-worldwide, thousands of autistic people are bullied daily and, sadly for many, it’s not just a childhood experience.

There are a few reasons why I believe people on the spectrum are more vulnerable to bullying. Firstly, a lot of people with autism struggle to regulate their emotions and their responses to other people and thus give huge reactions when being taunted which bullies love to see. This seems to be common in people on the spectrum and I still struggle with this as an adult. For children, it is much, much worse because most of them have not yet learned that the reaction is what bullies look for. Secondly, it goes without saying that social awkwardness and social anxiety is a huge facet of our makeup and bullies love to target people who are different . Many children with autism have very unique and niche interests which can provoke bullying from other children and, sadly, sometimes adults too. Some people with autism have motor stims such as hand flapping or rocking which other people often fail to understand and instead mock. Some people with autism can be unaware of when they have said something hurtful so will unintentionally offend a classmate or a work colleague and then have all of that person’s friends turn against them.

Those are some of the reasons why people with autism are more vulnerable to bullying but what we really need to do is create an environment where these children feel safe and happy. The National Autistic Society is introducing an Autism Awareness week where children in schools across the UK, both primary and secondary, will learn about what the condition means in a practical, day to day sense. This is a good start and I hope that those children who feel able to will be able to speak out about their own experiences living with autism. People need to know that autism is not scary-it’s simply a neurological variant. Although people come across people with autism and Aspergers in their everyday lives, true awareness is still too low in my opinion. Schools also need consistent anti bullying programmes. I have read so many stories from parents on Facebook groups about children with autism who are targeted for years and, when they finally snap and retaliate, they are the ones who get into trouble. Violence is never the answer but bullying needs to be stopped before it gets to the point where violence occurs. In the ideal world, there would be no bullying at all but, sadly, in this world, it does happen so we need to be proactive in dealing with it. Some people with autism feel that the bullying is all they deserve-they need to be taught that it’s wrong and that they are entitled to be happy. A lot of people with autism, no matter what age or ability they are, struggle to communicate verbally, particularly in times of stress, so they need to be encouraged to report bullying in a different format such as letter writing if they are able to do so.

Some people sadly believe that bullying is “character building” and that it teaches the victim strength and determination to succeed. This is not true. Bullying often causes a lifetime of low self esteem, low self respect and mental health problems. The statistics are everywhere you look nd I have met many people in autism groups online who are living proof of that. Then of course there are the tragic cases where the bullying damages someone to such an extent that they commit suicide. Kennedy LeRoy, Gareth Oates and Maxwell Webb are just three cases I took from a Google search. There are hundreds more cases that never reach the news. Of course people without autism get bullied too and I am not dismissing their experiences. All bullying is wrong. People, please educate your kids about difference. If people start accepting and embracing difference during childhood, hopefully as adults they won’t feel the need to belittle those with a different outlook on life.

 

 

Autism and Language

This is a topic that I have touched on in previous blog posts but I thought it deserved more attention so I am devoting a whole post to it today.

Receptive and expressive language problems are common across the entirety of the autistic spectrum. They range from being unable to vocalise any words at all to being completely verbal but taking language literally and failing to understand sarcasm. What is vitally important for people to understand is that, during times of stress, anxiety or high emotion of any kind, even the most verbal person on the spectrum can find themselves unable to vocalise coherently at all. This is something that a lot of people find hard to understand as they believe that, if someone is able to communicate verbally most of the time, they should be able to communicate at that level all of the time. They find it hard to understand that sometimes stress reduces us to levels of such extreme panic that we cannot form the words to verbalise them and the more people are expecting us to talk, the harder it becomes to verbalise anything. In these circumstances, patience is vital. Pushing somebody to talk just makes the whole situation worse even if you believe you are helping. Given time, most people will open up to the people they love and trust but it is by no means an instant thing.

As a person with Aspergers, my language problems are primarily that I take things literally. I often misunderstand instructions and only realise afterwards just how much I misunderstood what I was asked to do. I have got a lot better at asking for clarification of what people are expecting me to do and I have learned from my mistakes over the years but often I realise just how differently I perceive life to other people and how this affects how I interpret their language. I will never refuse to do anything I am asked to do (obviously within reason) but often I have to ask people to clarify. As mentioned above, I also find it very hard to communicate verbally in times of anxiety and distress. People can sometimes find this hard to believe until they witness it for themselves as, once you get to know me, you realise that I talk a lot and have a very loud voice but I find communicating very hard work when I am emotional.

One important thing to remember is that, even with people who are classified as non verbal or pre verbal, no spoken language does not equal no communication. Behaviour is a form of communication and so are individual vocalisations which relatives, friends and other familiar people get to know over the years. Everybody communicates in their own way and everybody has something to say. A key trigger for challenging behaviour in a lot of people who are pre verbal is their form of communication not being understood. Communication aids can often help in cases where people’s communication is not being understood. The world is designed for people who can communicate verbally which, in my opinion, is wrong. To me, all types of communication should be equal. There are lots of people who do not communicate verbally but type extremely eloquently and can often get their point across more nicely than some people who communicate verbally.

As a final point, please remember the individual language needs of people with autism in all its forms in your life. Try to avoid sarcasm if you know you are conversing with somebody who struggles to understand it and, if you see they have taken something in a way other than you intended, explain how you wanted them to take it nicely without patronising them. If your friend or relative does not communicate verbally, accept this as part of who they are and support them to find other methods of communication. Learn their gestures and vocalisations and understand that this is how they communicate their needs. Yes life would undoubtedly be easier for them if they could communicate verbally but, with love and support, they can find their own methods of communication which, in many cases, vastly reduces the behaviour that is caused by frustration at not being understood. Language issues are part of our lives for a lot of us on the spectrum but, with patience and encouragement, we can succeed.