Happy Easter to all!

Firstly, I must apologise for my neglect of this blog over the past few months. My husband and I have both been very busy moving into a flat suitable for our growing family and sorting out the nursery and baby’s furniture. My pregnancy has also recently run into a couple of potential complications, one of which I have been cleared for and one of which I am still undergoing testing and monitoring for. With only a month or so left to go, it’s really beginning to feel real now! Soon we will be a family of 3 and I will have a son or daughter who is completely dependent on me. I can’t wait but it’s nerve wracking too.

I would like to wish all of my readers a Happy Easter if they celebrate it. I hope the Easter celebrations have been all you hoped for. I’ve had a quiet Easter this year but really enjoyed the Easter Sunday church service we attended yesterday.

Of course April also marks Autism Awareness Month. I have seen a lot of activity on the online groups I belong to and I have enjoyed reading all the blog posts about life on the spectrum that people have been writing to raise Autism Awareness and to promote Autism Acceptance. As mentioned before, life preparing for our new arrival has meant that my own blogging has been limited but, as always, I hope that my blog has been helpful to my readers and I have noticed a couple of new readers comment on my older posts since the beginning of April, pointing out that what I describe sounds exactly like them. It always makes me happy when I receive comments like this as it reaffirms the fact that there are people out there who rely on my blog to help them make sense of the world and help them realise that they are not alone in the way they interpret the world, something that despite all the facts, figures and statistics, most people on the spectrum feel on a regular basis. As long as this blog is available to the public, I feel that I am doing my bit for Autism Awareness/Autism Acceptance and, as I move on to the new life chapter of parenthood, I will have so many more experiences to write about and hopefully receive help from mothers already in my position and, given time, also be of help to other mothers on the spectrum.

I wish all of my readers the best. Look after yourselves and I will be back with another blog post soon, I promise!

My thoughts on people claiming children can grow out of autism

One opinion I have come across rather a lot lately in autism groups online is that children can grow out of their autism once they become teenagers or young adults. This opinion is mainly held by parents who claim that their children have grown out of their autism. The most famous recent example of this was Toni Braxton claiming that her 13 year old son Diezel no longer displays symptoms of autism (my IPad is funny about hyperlinks but Google Toni Braxton autistic son and you’ll get several articles about it come up). However, I have also come across a couple of adults online who claim to have grown out of their autism and say that, if they were to go through the diagnostic process today, they would not get a diagnosis of any autistic spectrum condition.

Let me clear something up before we go any further-autism can not be grown out of. It is a neurological condition which means our brains are hard wired in a certain way that gives rise to the symptoms of autism. Every individual is different but, while outward manifestations of the conditions on the autism spectrum will differ from person to person, the neurological make up is similar. I do maintain that people who do not have the associated severe learning disabilities that can be co morbid with autism can learn social skills the same way that someone without autism can learn regular skills. This is how I learned the social skills I have-through years of hard work and many mistakes. This does not mean that I have grown out of my Aspergers though. It doesn’t take much for me to forget these social skills-if I am tired, stressed, anxious or not feeling well, my brain cannot access these as they are not natural to me and so people who haven’t seen that side of me before where I am unable to communicate verbally or blurt something out impulsively find it hard to match that person with the person they normally know me as. I am constantly working at 100% to be socially acceptable and the irony with that is that, when you work so hard to fit in with the world, people can be very unforgiving when you do have a bad day and suddenly, as the quote goes, “my autism starts showing”. It worries me that these children who have apparently grown out of their autism are putting themselves under immense pressure to fit in socially and, as such, are not given enough recognition that they do still struggle and, from experience, this can lead to a vicious cycle of low self esteem and self loathing because it feels like they can never truly be themselves. I feel a lot happier when I have an outlet for my stress, such as stimming. After a long day at work, I usually stim for at least 30 minutes uninterrupted and, after that, I feel calm enough to attempt to sleep. I know some autistic people who have been shamed out of stimming, either by relatives or by professionals such as teachers, and feel like they have no outlet for the stress that comes from having to constantly monitor your behaviour in order to fit in as best as you can with society.

I also maintain that people usually grow into their autism rather than grow out of it. Autism is a lifelong condition and, like any lifelong condition, over the years, you learn to live with it and you learn coping strategies. Many people with autism who are sensitive to noise, for example, really struggle as young children and can have very public meltdowns due to over stimulation but, by the time they become adults, they have learned which steps to take to avoid over stimulation such as headphones or ear defenders or ordering shopping online rather than going to busy supermarkets. People who have severe learning disbilities alongside their autism also learn, over time, how to regulate the auditory input they receive from the environment. A lot of autistic people make their own unique vocalisations which often serve to block out other auditory input by making that noise the loudest input they are receiving. We need to respect other people’s coping strategies. As long as it is doing us no harm, why force them to stop, creating more anxiety and distress? If someone flaps their hands to calm themselves down after holding it together all day, respect that and don’t try to stop them from doing it. I have never seen personally why hand flapping is considered so socially unacceptable by some. I can think of so many things that I would consider socially unacceptable but wider society deems perfectly fine but they can’t tolerate seeing someone flapping their hands. It’s one thing I really don’t get.

People with autism also benefit from extensive support (where available). This support can enable them to fulfil their potential but it doesn’t mean they are no longer autistic. I benefited hugely from the social skills sessions I attended in secondary school but I am still autistic. Yes, as a child, in home videos, I came across as very noticeably autistic (lots of hand clapping and running around in circles) and now, as an adult, I just come across as shy and socially awkward to most people (unless they work in the autism field) until you get to know me a bit better but that’s down to years of hard work. Another thing I find ironic is that, with the recent Government cuts, a lot of autistic children in both mainstream and special schools are having their support reduced precisely because they have benefited so much from that same support. It just doesn’t make sense to me.

I find it interesting that most people believe that the people who have grown out of their autism are the extroverts. Toni Braxton claims that her son is now a “social butterfly”. Whilst there are a lot of people with autism who do present as socially awkward, conversely some of the most charming and sociable people I know are autistic. The media has done a lot of damage by portraying autism as introversion. Yes, a lot of people on the spectrum are introverts but there are lots of extroverts on the spectrum too and also a lot of introverts who are not autistic. It is not impossible for people with autism to make friends or to keep them. It is stereotypes like this that can do so much damage to our community. I have read accounts from women who have gone for a diagnostic assessment only to be told that they cannot be autistic because they made eye contact with the psychiatrist who was assessing them or because they are married. One man was told that he cannot be autistic because he works full time as a highly paid professional. Prejudice is still very much in existence when it comes to autism. There are still far too many professionals who believe that autism is a childhood condition and that, if you weren’t diagnosed before your 18th birthday, you’re obviously not autistic. People whose autism is not picked up until adulthood often have mental health issues such as depression from working so hard to fit in and never feeling like they can truly be themselves.

Lastly, misdiagnosis can and does happen although it is nowhere near as common as some people would have you believe (mainly the people who believe autism is just an excuse for poor parenting but that’s a whole other topic!) I once came across someone on an autism forum that had never experienced a meltdown or shutdown, never had obsessions, was very adept at reading body language and social cues, had no sensory issues, did not have any urges to stim and strongly felt that they had been misdiagnosed which we all agreed with but I think he was a very rare case. If anyone truly feels they have a diagnosis of an autism spectrum condition but do not have any of the symptoms any more, I would suggest speaking to your Doctor or the person who diagnosed you as you were most likely misdiagnosed. Although I have changed a lot since my initial diagnosis, I know that I would still receive the same diagnosis today if I went for a reassessment because my brain hasn’t changed since my last assessment. Well actually I would now be given a diagnosis of Autistic Spectrum Disorder Level 1 given that Aspergers has now been absorbed into the spectrum as a whole which, in my opinion, was the best thing that could have happened but that’s for another day!

So Toni Braxton’s son, unless misdiagnosed in the first place, is still autistic. Given that I don’t think she ever accepted her son’s condition in the first place (she was quoted as saying that his autism was a punishment from God for a previous abortion-it’s pretty distressing to know that some people still consider autism or other disabilities as punishments), I think her eagerness to assert that his autism has now vanished is related to that. More than likely, Diezel, like most teenagers on the spectrum, has devised his own coping strategies and grown into his autism. I am sure he will grow into a fine young man who hopefully accepts his condition and works with it to achieve his full potential.

 

My Thoughts On The A Word

As many of my UK readers will probably be aware, the BBC recently aired a 6 part drama series called The A Word. The programme featured an extended family, at the centre of which was a young boy called Joe who was autistic. I had seen The A Word advertised several times in the fortnight prior to the first episode airing and I felt it would be a good series to watch.

The series follows Joe and his extended family through the diagnostic process and examines their feelings towards Joe’s autism as they go through the journey from denial to anger to acceptance. There were some aspects of Joe’s condition that really resonated with me. Firstly, his obsession with music and listening to the same tracks repetitively. As most people who have lived with me can verify, I can listen to the same song hundreds of times in a row without getting bored. I found it very fascinating when the speech therapist said to Joe’s parents that his constant repetition of song lyrics was his way of shutting the world out. I remember attending a training session on autism in a professional capacity, hearing the trainer say that the ultimate way to block sensory stimulation for autistics growing up today is through personal headphones and IPods and suddenly realising that’s exactly what I do on a daily basis. Yes I enjoy listening to music but it also serves a much more specific purpose for me in that it allows me to retreat into my own inner world and cuts out certainly all other auditory stimulation. Without music, I would definitely struggle a lot more than I do on public transport, for example. Music is my number one coping strategy for life in general.

His withdrawal from activities always resonated with me. He does display destructive behaviour on a couple of occasions, once when he rips all the photos from the photo album and trashes the living room and then when he trashes his classroom after his makeshift au pair Magda is forced to leave due to issues with her immigration status. On most occasions, however, he isolates himself and plays on his own, even sitting on the floor seperately from all the other children at his own birthday party. He is a sensory avoider rather than a sensory seeker, hence the headphones all the time, and this reminded me so much of how I was as a child. I still avoid certain types of social environments such as bars or nightclubs because the amount of people and noise is too overwhelming for me.

I have seen several discussions online in which people on the spectrum have commented that they feel the views expressed by Joe’s parents in the programme are too harsh, particularly the view expressed by Joe’s dad that he wants a “normal child” in the episode where he talks about wanting another child. However, I actually think the programme showed an honest portrayal of the process of accepting a diagnosis of autism for your child. Very few families accept straight away that their relative has autism-it’s often a very long journey and sadly not everybody  reaches the stage where they can see autism as a part of who their child is and seek the positives in the condition. I would also like to point out that I have met a lot of people on the spectrum who cannot accept it themselves and lots of us have times where we wish to be “normal”-if we cannot accept it and embrace it all the time, how can we expect families of newly diagnosed children to do so? I thought the progression was sensitively portrayed. At first, Joe’s mother refuses to allow the word “autistic” to be used in her house. In the final episode, when Joe, as happens to a significant percentage of children with autism, wanders off and is declared missing, you can see her finally voicing to the small rural community that Joe has autism and explaining how this may mean he can be unresponsive when people call his name. The crisis forces her to accept Joe’s differences. I did appreciate the sensitivity and tolerance that Joe’s older half sister, Rebecca, displayed towards her brother. In fact, Rebecca and Jo’s uncle and auntie Eddy and Nicola were the three characters who embraced Joe as he was and had no desire to change him. I thought this was refreshing and is similar to most families in real life. You will always find some people are more accepting than others whereas some, like Joe’s mum, confuse wanting the best for their child with wanting a “normal child”.

What was plainly obvious to me was that Joe’s parents loved him dearly-this was never in question. It is because they love him so much that they are so scared for his future. His mum is determined to find him the best therapy available and her obsession with helping Joe means that Rebecca feels emotionally neglected and ends up turning to her uncle when she has sex rather than her parents because they are so busy searching for people that can help Joe. Rebecca’s opinion was that Joe is the same boy he has always been which was charming to see. She is annoyed that her mum cannot see this. The programme deals brilliantly with the plethora of emotions and opinions that a diagnosis of autism brings but at the core of it all was love and devotion. By the end of the series, there were signs that Joe’s mum was now beginning to accept Joe for who he was which was the best ending.

Another criticism levelled towards the programme from parents going through the diagnostic process for their children is that the diagnosis seemed to be given very quickly. In reality, depending on where you live, a diagnosis of autism in the UK can take up to 4 years from when parents first suspect that their child may be autistic to when an official diagnosis is given. This means that, by the time autism is diagnosed, most parents have already accepted that this is what the diagnosis will be, unlike Joe’s parents in the programme. I think this is generally a case of artistic licence to fit in with the timings of the programme. I do think it would have been interesting to have a set of parents who were relieved at the diagnosis rather then initially in denial though.

Others have expressed the opinion that the character with autism should have been a girl or from an African, Asian or Far Eastern background as these factors often make diagnosis harder and cultural factors mean that autism is treated very differently in certain communities and thus under diagnosed in certain communities. Some people thought that the programme should have explored an adult receiving a diagnosis rather then a young child. Much as I agree that exploring different options would be interesting, I did think the programme was brilliant anyway. I particularly liked the fact that it showed people’s misconceptions about autism. Joe’s grandad Maurice says when he first hears the news, “But he talks, he smiles, he looks people in the eye. How can he be autistic?” I know that the producers of the programme worked very closely with the National Autistic Society to ensure that they portrayed every aspect of autism as accurately as possible and I thought it was great that this misconception was addressed early on. This misconception can be a very damaging one-I have come across people in the autism community online who have been told by medical professionals that they cannot have autism because they can maintain eye contact with the professional who is assessing them. These are people who are desperately fighting for a diagnosis because they are struggling only for a diagnosis to be dismissed because they can look into someone’s eyes. It sounds unbelievable but sadly it’s true.

Overall I loved the programme. I would love for there to be a second series following Joe as a teenager to explore the many issues with puberty and the spectrum and also to explore the mental health problems that often come from years of feeling different from others, such as depression and anxiety. Joe did not seem to care that he was different during this series because of his age but I can guarantee, from my own experience, that, as he grew, he probably would start noticing and caring and it would be interesting to see how this was tackled in a separate series.

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.

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!

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.

 

 

The A to Z of Aspergers

I got the idea for this blog post from a blog that I follow on here. This blogger wrote a blog post on the A to Z of beauty guidelines and, at the end of the post, said they would like to read an A to Z from other bloggers on any subject that fascinated them so I decided to write an A to Z of my personal experience of Aspergers. This blogger follows me on here so I hope they like it and I hope the rest of you do too. As ever, this is my personal experience of Aspergers so it may not be the same for everyone but I hope it helps to explain more about the condition.

A is for anxiety. This is one of the biggest issues inherent in Aspergers, particularly in my case. If there is something to be anxious about, you can bet that I will be anxious about it. Some things I worry about would worry anyone, such as job interviews, but other things I worry about would be dismissed by most as trivial such as an honest mistake I made years ago which still has the power to keep me awake at night all these years later. Most people have felt anxious in their lifetime over certain circumstances but I live with a different, more pervasive form of anxiety, which sometimes, though far less regularly than it used to, climaxes in panic attacks over things that most people would dismiss as not worth bothering about. I have been dealing with and managing my anxiety since childhood and I understand it logically very well now but that doesn’t always translate into being able to keep it down to a manageable level although, as said, it is so much better than it used to be.I can now make routine telephone calls such as booking a taxi or a GP appointment without having to encourage myself into doing it for half an hour beforehand.

B is for biting. One of my more problematic mannerisms (and we will come on to more of those in the next letter) is biting. I don’t bite other people (which you will be pleased to know) but am constantly biting my nails and, when someone says or does something that annoys or angers me or if I am very anxious about something, my first instinct is to bite my fingers or knuckles (although I do pick at my skin a lot when I’m anxious as well but not when I’m annoyed). I distorted my teeth when I was younger through constantly pushing my thumb behind my top front teeth and pushing my thumb forward leaving the indents of my teeth on my thumb. The biting progressed on from this. This is something I am trying to work on as I know that it’s not a healthy behaviour and I know that I need to find a way to let people know I am unhappy with them verbally rather than taking it out on myself.

C is for compulsive mannerisms. These are physical mannerisms that I feel compelled to carry out. My most longstanding one is that, when I am reading or having a conversation with someone and numbers are mentioned, I have to count the numbers that I see/hear on my fingers, no matter how high they are. Sometimes it makes my fingers ache but I feel ill at ease if I cannot do it or am prevented from doing it. Another physical mannerism that a lot of people don’t understand and see as time wasting is that, after I have read my daily newspaper, I like to read the articles again and circle each line. I find that this helps the information to stay in my mind but I also like the feel of the repetitive wrist motion I make when doing this. These mannerisms are things I find it very hard to explain to people who aren’t on the spectrum but the compulsion behind the mannerisms is shared by many people on the spectrum, even if the mannerisms themselves are different.

D is for depression. A lot of people with Aspergers live with depression. There is a lot of debate as to whether the difference in neurological wiring that causes Aspergers also causes someone to be more susceptible to depression or whether the depression is purely a symptom of living in a world that we are not suited to and that we struggle to understand and vice versa. I personally think it is the latter-I think the reason why so many people on the spectrum suffer with depression is because we strive for acceptance but struggle to get it because society has so many rules and boundaries that we get wrong. The loneliest feeling in the world is wanting desperately to fit in but knowing that you don’t.

E is for executive functioning issues. These are the issues with planning and preparation that can make a lot of people with Aspergers appear very disorganised or leave people baffled as to why someone can hold a university degree but not be able to cook a meal with more than one component as they struggle to time every ingredient to be ready at the same time. A very frustrating aspect of Aspergers for a lot of people and not helped by people assuming that we are just stupid or lazy.

F is for fixations. Some may say that fixations are the same as obsessions but, to me, fixations are more negative whereas obsessions are very enjoyable. I tend to fixate on one thing that someone has said, which is usually negative, even if the rest of the conversation we had was positive. I then mull this over and get stuck in a repetitive circle of remembering it, becoming anxious about it and then over thinking it far more than I need to.

G is for gastrointestinal issues. A lot of people on the spectrum suffer with gastrointestinal issues such as constipation, diarrhea, stomach aches and nausea. Sometimes this is due to a limited diet but I believe a lot of it is down to anxiety and stress. I always feel anxiety in my stomach and, as I am almost never completely relaxed, it makes sense to me that I have a lot of stomach issues from this.

H is for honest. The first positive aspect of Aspergers to be included in this blog. I am a very honest person. I don’t see the point in lying or deceit. I think the world could do with a lot more honesty and would be a lot nicer and a lot easier if everybody was honest with the people in their lives.

I is for insomnia. A lot of people on the spectrum experience insomnia of different types. My form of insomnia is struggling to get to sleep in the first place. It can take me several hours to get to sleep but, once I am asleep, I tend to sleep through until my alarm goes off or until I wake up naturally if it’s not a work day. I know that I don’t get enough sleep. I usually get about 5 hours a night when I’m working. During the holidays, I get quite a bit more and can sleep up to 12 hours at a time!

J is for jealousy. It may not be a popular view amongst people on the spectrum who like to focus on the positives of their diagnosis at all times but I believe that a lot of people with Aspergers are jealous of people without the condition. I know I certainly am as they appear to be able to achieve in social situations as naturally as they breathe whereas I have to work extremely hard to cope in these same situations. I know that jealousy is a highly unattractive trait in a person but I can’t always help it.

K is for being knowledgeable about ourselves. If you have a friend or family member who is on the spectrum, please listen to them, whether this is listening to what they are saying to you verbally or listening to what they are communicating via their behaviour. Like a lot of people with Aspergers, I am very self aware and I know what works for me and what doesn’t. Please know that we are the experts on how our autism affects us and it is different for each person. Listen to what we are communicating to you and trust us. We know our autism-please respect that.

L is for literal thinking. This is pretty self explanatory and I don’t believe it needs much explaining other than to say that most people on the spectrum are literal thinkers so be careful how you phrase instructions!

M is for mood swings. I don’t mind admitting that my mood tends to swing a lot more than most peoples. I watched a documentary recently about people living with bipolar disorder. One of the men featured on the documentary had Aspergers too. I found it fascinating watching him explain how his mood was so heavily influenced by the attitude of the people around him. I am the same. I can go from very, very happy to extremely low in the space of seconds based on the people around me and it’s good to know that there are other people the same out there.

N is for the nagging internal voice that most of us have. The voice that comes in when you are feeling happy about surviving a social occasion to remind you that you were bound to have made some horrific social faux pas which everyone was simply too polite to point out to you. I read a book several years ago by a woman who has severe depression. One of the chapters focused on her “chatterbox”, the internal voice that is determined to bring you down. This really touched me as I have my own “chatterbox” which I frequently have to fight against in order to prevent a downward spiral of negative thoughts.

O is for OCD, something which a lot of people on the spectrum live with, although not always to a diagnosable level. There are different forms of OCD but I do believe that our obsessive natures make us more susceptible to OCD.

P is for perfectionism. A lot of people with Aspergers are perfectionists. I am a perfectionist myself when it comes to certain areas, such as my paperwork at work. I like everything to be very detailed and clear and I like to make sure everything is spelled correctly. I feel very uncomfortable when I read something with spelling mistakes even though I know there are many reasons why someone may struggle with spelling and that it is the content that matters most-I just can’t stop myself feeling uneasy.

Q is the only letter I couldn’t couple with a trait. If anyone can think of one, I would love to know!

R is for ritualistic. This couples together with obsession and also crosses over with OCD traits. Rituals and routines keep me sane and keep me functioning. Without this structure, I don’t know what to expect and can’t cope.

S is for strengths. This blog post may be more negative than positive but everybody on the spectrum has a lot of strengths too. My main strength is my fantastic long term memory. My colleagues at work constantly point out how I remember the tiniest details in life and I wouldn’t have it any other way. Celebrate your strengths-you wouldn’t be you without them!

T is for terrific. No matter how low you may feel, you are terrific and special. Focus on that, no matter how hard things get-better times are ahead.

U is for unique. A lot of people use the term “unique” in relation to me-I take it as a compliment. I know that my mind works differently to most and sometimes that causes me a lot of stress but I wouldn’t have it any other way!

V is for versatile. A lot of people on the spectrum are highly versatile even if we may not seem it when you first meet us-we have to be to survive in this puzzling world!

W is for watching others constantly. I am constantly watching people in social situations and trying to learn from this. It doesn’t always work but I do believe that, over the years, this method has helped to greatly reduce the amount of people I offend through social mistakes.

X is for X ray attention to detail. I mentioned this when I wrote about strengths. A lot of people on the spectrum notice the tiniest details. Life needs people who notice the small details that others overlook.

Y is for yo yoing self confidence. This couples with mood swings a lot. When I am in a good mood, I feel very confident and can recognise how much I have achieved over the years. I hold a university degree when it was once thought that I would be better off in a special school, I have held a job for the past six years when I was once thought unemployable and my blog has been read in 100 different countries. When I am in a low mood, I can’t recognise these achievements at all and just focus on the disappointments I have experienced in life. I think this is common with everyone-everybody is more inclined to dwell on the negative when their general mood is low so it’s not a trait specific to Aspergers but it does begin with Y so I thought it was worth mentioning!

Z is for zeal. If there’s one thing lots of people on the spectrum have, it’s zeal-sheer determination. I am a very determined person and I know that, no matter how long it takes and how many disappointments I experience on the way, I will eventually achieve everything I set out to do.

Well that concludes my A to Z of Aspergers. A mixture of positive and negative but always honest. I hope you have found it interesting.

Autism and Christmas

Firstly, I would like to apologise for not posting for a couple of weeks-I rely on a Wifi dongle to blog when I am at work as the 3G coverage is so limited and, although it might be enough to browse Facebook for 5 minutes, it is nowhere near reliable enough to write and then submit a blog post. Unfortunately my Wifi dongle ran out of bandwidth for the month earlier than I was expecting it to. I am now back at my mum’s where there is Wifi so I am back to blogging again!

As Christmas Day is almost here, I thought it would be nice if I wrote a seasonal blog post about how people on the autistic spectrum cope with Christmas Day. Christmas Day can be very challenging for many people with autism and their families. A lot of people with autism struggle to cope with changes to routine and Christmas Day is so often unstructured with extra people coming for lunch and dinner. One simple thing that really helps is pre warning your relative with autism that there will be extra people for dinner for this one day and perhaps writing a social story based on relatives coming to celebrate Christmas with you. If you will be spending Christmas Day at somebody else’s house, again warn your relative with autism that this is what will happen but remember to consider carefully when you will let them know. Some people with autism like to know weeks in advance but, for others, letting them know so early will just cause extra stress and anxiety, particularly if they have no concept of time.

Presents can also be a huge issue for those of us on the spectrum. A lot of us don’t like surprises and I remember reading a recent post on a Facebook group about a mother whose son had asked his parents to take him shopping so he could buy his own Christmas presents, help to wrap them and then unwrap them the same day because he couldn’t cope with not knowing what he might get. There are some people with autism who enjoy receiving the same gift year after year because it is predictable and comfortable. This also combines with lacking the patience to wait, something else which a lot of people with autism experience. I have read stories of parents of children with autism having to ensure that new toys that require batteries have those batteries in place before the present is opened as their children simply don’t have enough patience to wait for batteries to be found and then placed in the toy. They want to play with the toy immediately and reject it instantly if it appears to be broken, sometimes experiencing meltdowns because they don’t understand why it doesn’t work. Others on the spectrum, like myself, have no problems with waiting for presents but struggle with thanking other people for them. I will thank someone for a present and genuinely mean it but this won’t translate to my facial expression and voice which will remain deadpan and monotone. It is difficult for people to understand that actually we are very grateful for our presents, just not always very enthusiastic about it!

Christmas decorations can be a source of sensory overload to many people on the spectrum. Bright and flashing Christmas lights, a variety of coloured baubles and tinsel that gets absolutely everywhere can be fun for lots of people, myself included, but, for people on the spectrum who are hypersensitive to visual stimuli, they can be a source of great distress. I am not advocating that all households with an autistic person or people living in them never put Christmas decorations up but perhaps leave your relatives bedroom plain of decoration and only have certain rooms of the house decorated so their exposure to stimuli is limited. For some children on the spectrum, indeed young children in general, Santa can be quite frightening. Some children with autism have strong aversions to facial hair and some have a strong fear, even to phobia levels, of a particular colour. If the particular colour that causes distress is red, you won’t have much luck getting them near Santa!

Another source of stress at this particular time of year for some people on the spectrum is Christmas dinner. As mentioned on this blog before, a lot of people with autism have a limited diet and are often described as fussy eaters. Some people with autism will happily sit down to a Christmas dinner with their families-others will refuse to break their usual eating habits for Christmas Day and follow their usual diet. My advice is not to engage in any battle that will leave both of you feeling more upset and stressed. If they won’t eat Christmas dinner, don’t force them. Christmas should be about families being together, rather than everybody eating the same thing.

Overall, I would recommend trying to make Christmas as peaceful and stress free as possible for yourself and/or the person you know with autism. If you are on the spectrum yourself, respect your limitations at this incredibly social time of year. If you know that the effort of going to a Christmas party and socialising all night will leave you exhausted and unable to function the next day, consider whether it is really necessary for you to go. If you have a relative or friend on the spectrum, listen to what they are trying to communicate to you about how much they can cope with and what they can or can’t tolerate. This simple act of respecting limitations can make the Christmas period a lot less stressful for everyone.

I would like to take this opportunity to wish all my readers a very Merry Christmas if you celebrate it and Happy Holidays for those who don’t celebrate Christmas. I hope it all goes smoothly and I will be back next Monday for my last blog of 2014!

My research I did today on decision making in autism

Today I participated in a research study based in London. The study had been recommended to me by a friend of mine who had taken part in it a few weeks ago. There are two parts to the study-the first part focuses on whether people with autism have increased auditory perception and on the differences in how autistic people and people who don’t have autism respond to faces. The second part of the study focuses on the perceptual differences in autism and how these affect decision making compared to people without autism. It was a really fascinating day and I was paid for my time and my travel expenses which was a bonus!

I met the researcher in charge of the study at the local Tube station-I had requested to meet him there because my sense of direction is so poor that I don’t trust myself to navigate the streets of London even though the building was only a 5 minute walk from the station! In the first study, I had to put on some headphones and listen to some auditory recordings focusing firstly on just the women in the recording and then solely the men and answer some comprehension questions afterwards. It was really hard for me to focus on just the one group and the sounds were getting very jumbled in my head but I didn’t do too poorly on that task as far as I know. Then I had another task where I had to distinguish between a dog’s bark and a lion’s roar from a millisecond sound clip and then say whether I had also heard the sound of a car mixed in with them. I found this very challenging as, to me, the lion’s roar and the car engine sounded the same! I then had a hearing test and the results of that were that my hearing in both ears is very good. The second part of the task featured several screens of 2 playing cards with female faces on them and I had to choose which face I preferred and there were multiple options as to why I chose that face. Some were based purely on aesthetics whilst other options dealt more with how friendly the person looked. That was really interesting!

Then I went into the room next door and did an IQ test. I didn’t get the full breakdown but the second researcher told me afterwards that I had scored brilliantly on the verbal reasoning sections but my block design score was extremely poor as I only got one block design right. It was rather embarrassing being sat there knowing how the blocks are supposed to fit together but not being able to manipulate them in the right way. As I have mentioned on here before, I don’t like making mistakes and failing a task like this in front of 2 researchers was rather awkward. The researcher said at the end that my lack of ability in this task relates to my everyday problems with direction and spatial awareness and that I am definitely more skilled verbally. He said that the extreme discrepancy between scores made it difficult for him to find an exact match with someone without autism to assess our differences in decision making. Who said I make life easy? Lol! After the IQ test, I had to do a number accuracy game where I had to fixate on the centre of a computer screen and there were two boxes (one either side of the screen) with numbers flashing up too quickly to be calculated and I had to guess which box had the highest score. If my guess was correct, it flashed green and, if it was wrong, it flashed red. My accuracy for this ranged between 74% and 77% which was not too bad at all. I was able to look at both boxes at the same time and compare how big or small the figures were to try and work out which scored the highest. I then had to fill in a questionnaire aimed at finding out which autistic traits are most prominent in my manifestation of the condition and then I had another computer exercise where I had to look at a flashing circle and listen to a series of beeps and press one button if the sound and image were in sync and another button if they were not in sync. After this, I went back to the number accuracy exercise but, this time, I had to select the box with the lowest score. In the middle of this, the fire alarm went off so I was a bit distracted at this point! I then went back to the flashing circle and beep exercise and, after that, the experiment was over.

I walked back to the station with 2 of the researchers. I was having a fascinating conversation with one of the researchers, a lovely Greek man. He was telling me how he is trying to broaden autism research away from solely children and explore its impact on adults who have, in the majority of cases, learned how to socialise in what is seen as an appropriate way through learning it as an intellectual skill.

It was a fascinating day and I look forward to eventually receiving the results once the analysis has been done. I hope that it will help people understand more about the unique way in which we perceive the world. I would definitely be interested in taking part in other research studies focusing on adults with conditions on the autistic spectrum and hope to be involved in some more pretty soon.

Does The Cause Of Autism Really Matter?

Disclaimer-this post may come across as controversial to some. I know, for some parents whose children have just been diagnosed as being on the autistic spectrum, finding out what may have caused their child’s condition is important to them as a key to understanding how autism works. It is not my intention to cause offence to anyone but this post contains my personal views which will, of course, differ from some peoples.

As someone with Aspergers Syndrome, I keep up to date with autism research. As such, I have read lots of articles querying the cause of autism. Over the years, the speculation about the factors that cause someone to be autistic have changed. Initially, in the 1960s and 1970s, the “refrigerator mother” theory was common. The speculation was that autism was caused by mothers not being affectionate enough so the children never learned how to display affection. This is, of course, an outrageously inaccurate and now discredited theory that caused emotional distress to lots of families who wrongly believed that they were to blame for their child’s autism. Not much was known about the condition at the time-if it was, professionals would have realised that children with autism can be and often are very affectionate in their own ways, which often differ from how neurotypical children display affection.

Then, in the 1990s, the MMR (measles, mumps and rubella) injection became the scapegoat for the rise in autism diagnoses during this decade. The doctor who carried out the research study claiming to show a link between the MMR jab being given and the child developing autism in the days and weeks following this has now been struck off and the research has been discredited but the belief that the MMR jab causes autism is still common and is a very damaging one. Now that parents are so worried about their child developing autism that they are turning the MMR jab down and either opting for single immunisations or not vaccinating their children at all, cases of measles in particular have increased hugely over the past few years. Measles, of course, brings its own set of life changing effects if not treated promptly-blindness, deafness, neurological damage and, of course, death. Yet so many parents refuse the MMR jab because they are terrified that their child will end up autistic, even if the brain damage that their child risks through a measles infection will be more damaging to that child’s life than autism would (if autism was caused by the MMR, which I don’t believe). There is one main reason why I don’t believe that autism is caused by the MMR. Autism is something that an individual is born with. It may not be immediately apparent and, indeed, one of the reasons why the MMR is suspected in lots of autism cases is because it only becomes apparent in some children when they reach the age of 18 months to 2 years, which coincides with the timing of MMR jabs. The reason why it only becomes apparent in some cases at this age is because this is the period of development where social skills and play skills really start developing, the skills that people with autism struggle with. However, I have come across parents online who, looking back after an autism diagnosis, will recognise symptoms of autism in their child when that child was less than a year old, long before the MMR jab was given. There is a rare condition on the autism spectrum referred to as Childhood Disintegrative Disorder or Heller’s Syndrome where individuals go through a period of typical development in their early years and then suddenly lose the majority of skills they have learned and regress noticeably. http://www.patient.co.uk/doctor/childhood-disintegrative-disorder-hellers-syndrome
I think that the majority of children whose parents believe that the MMR caused their autism probably have this variant of autism and the loss of skills coincides with the MMR jab being given. This is not to deny that, in some children, reactions to vaccines can be severe and can cause life changing effects-I just don’t think autism is among those. It is very easy, when dealing with a condition as complex as autism in all its various forms, to put the blame on one particular thing. I know there are people reading this who will disagree with me on this and believe whole heartedly that the MMR vaccine was responsible for triggering their child’s autism but I don’t personally have faith in that theory. Vaccine damage can occur but who knows if that child or those children would have been autistic anyway?

Skip forward to the current day and there are a myriad of suspected factors in autism development. The following news articles are just a few with different ideas of what could be behind the rise in autism diagnosis.

http://www.webmd.com/brain/autism/news/20141024/could-air-pollutants-raise-a-childs-autism-risk

http://www.autismdailynewscast.com/does-diet-cause-autism-chef-pete-evans-claims-so/16657/laurel-joss/

http://www.irishcentral.com/news/Autism-linked-to-Caesarean-section-delivery-says-Irish-study.html

http://around.uoregon.edu/content/digest-gut-microbes-may-affect-brain-and-behavior

Third Study Links Pesticide Exposure During Pregnancy to Autism

One point I really want to make is this-does what causes an individual’s autism really matter? My belief, backed up with my own research, is that autism and all its variants are primarily genetic, hence why we are neurologically hardwired in a certain way. I believe the cause behind most of the traits of autism is our sensory processing differences. Most of the behaviours and problems with social skills can be traced back to the unique way in which we process information. I do think that, with certain individuals, there are also environmental factors that combine with the genetic factors to result in autism-a traumatic birth or repeated infections in infancy. However, I also think that there are a lot of individuals with brain damage who display traits that are so similar to autism that their condition gets diagnosed as autism. It is important to remember also that, in lots of cases, autism is a symptom of an underlying condition rather than someone’s main diagnosis. Really, does it matter what may have caused somebody’s autism? It cannot be changed so focus on the positives and learn from your child’s autism-they can teach you a lot. What matters is that everyone on the spectrum receives the support and understanding they need in order to fulfill their potential and be happy, regardless of what is behind their autism, which is likely so varied that it is different in each individual. I am not putting down the research as I know a lot of time and effort went into it but sometimes we need to forget the science and just focus on the fantastic individual who needs your understanding.