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 autism and vaccination debate

Firstly, apologies for not having posted in a while. I am getting married next Saturday and my mind has been pretty occupied with that. I’ve also been very busy at work recently. As a consequence, my blog has been a little neglected but I decided it was definitely due an update.

This is a topic I have debated very seriously over whether to cover in this blog. I tend to shy away from confrontation and this topic is one which tends to lend itself to confrontation. However, I do believe it is a topic that needs discussion and I am going to do my best to write as articulate a post as I can surrounding this issue.

I have been a member of several Aspergers groups on Facebook ever since I first joined back in 2007. Every couple of weeks, someone will post an article claiming that autism and vaccines, in particular the MMR vaccine, are linked and that autism is essentially vaccine damage. Since the release of the documentary film Vaxxed, which features the now discredited research by Doctor Wakefield on the links between the MMR vaccine and autism, these links to articles have become a lot more frequent.

Now let me start off by clarifying that I do believe that there are some children and indeed some adults who are sensitive to vaccinations. Everybody’s immune system is individual and what might cause simply a sore arm in one person can lead to fevers and indeed lasting physical or neurological issues, such as what has been happening in some cases with the cervical cancer vaccine. However, I do not believe that vaccines and autism are linked for two primary reasons.

Firstly, it is now pretty much universally accepted that autism has a significant genetic component. Environmental triggers are almost certainly implicated too but these almost certainly happen in utero. Autism is a neurological condition. It affects the brain’s wiring. Our brains have always been autistic-an autistic person is born autistic and dies autistic. It’s a cradle to grave condition. It may appear obvious at different stages of a person’s life-someone with classic autism may start displaying stereotypical autistic behaviours at the age of 18 months whereas people on the Aspergers end of the spectrum can go undetected without a diagnosis well into adulthood. However, pretty much every parent of someone on the spectrum I have come across, whether through my work or my interactions in the autistic community online, realised very early on that their baby was different. I had my vision checked when I was still in hospital as my mother was concerned that I may be blind because I wasn’t focusing on her face. Proof that my aversion to eye contact was present from birth. I have lost count of the number of posts online I have read from relieved parents who have finally received a long awaited and fought for diagnosis where they mention that they were aware from when their child was just weeks old that there was something different about them. The crucial thing is that these subtle signs of autism are present before the age at which the MMR is given. There are also autistic people who have never been vaccinated.

Secondly autism has always been around. Diagnosis rates are higher now but that’s mainly because the medical profession are becoming so much more aware of the spectrum. Until relatively recently, most people with severe learning disabilities who were also autistic did not have their autism recognised because it was assumed that their learning disabilities were the cause of any other symptoms they were displaying. On the other end of the spectrum, people with Aspergers were often just viewed as pedantic geeks or nerds whose problems with social interactions were simply a result of being so academically minded. In the past 20 or so years, it has been recognised that autism encompasses a far wider spectrum than previously thought and people on both ends of the spectrum who may not have received a diagnosis 20 years ago are now receiving them. That doesn’t mean that the increase is down to the MMR vaccine particularly as a lot of adults receiving late diagnoses did not have the MMR as children because it hadn’t been invented back then.

There is a rare condition called Childhood Disintegrative Disorder which is considered by many to be on the autistic spectrum. This differs from the other autistic conditions because, in this condition, there is a period of regression and loss of skills at the age of around 18 months to 2 years. I believe that most cases where the MMR vaccine is blamed for autism are probably cases of CDD. Because the MMR is given at the same age, it is easy to assume that the 2 are linked but the regression would have taken place anyway even without the vaccine. Another important thing to take into account is that the social skills impacted by autism are only seen to be impaired when it comes to the age where other children use them, in play with toys and play with other children. Again, this usually coincides with the age where the MMR vaccine is given.

I can understand the need by parents to have a firm answer as to what has caused their child’s autism. From their point of view, they have just been given a diagnosis which is massive and has lifelong consequences. To then be told that the professionals can’t pinpoint why your child is autistic must be devastating. Humans love answers and there isn’t any with autism. However, this doesn’t mean that the vaccine is to blame. The danger of course is that a significant number of people are so scared that vaccines might cause autism that they refuse to vaccinate their children. Consider how this makes people on the spectrum feel. To say that you would rather your child catch an illness that can be fatal rather than risk autism is basically saying that autism is a fate worse than death, which is not true and deeply hurtful to everyone living with autism on a daily basis. Refusing vaccination also has a significant impact on immunosuppressed individuals for whom a relatively minor illness can cause serious complications that could be fatal.

Of course, whether or not to vaccinate your child is entirely the decision of the parent. I would just hate to think that fear of autism was behind refusal of vaccinations which can have serious consequences. Autism is a hard condition to live with but it’s not something that people should fear to such an extent that they are willing to put their kid’s lives at risk. What we should really be asking is why is autism seen as a fate worse than death and what should we, as a society, be doing to change that? I’ll leave you all with that thought.

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!

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!

 

Lack of ability to understand inference

It sometimes astonishes me that I can totally miss the point of a conversation that the rest of the participants in that conversation understand perfectly. Like a lot of people with Aspergers, inference and hidden meanings trouble and confuse me a lot.I often find myself watching a TV programme and being completely surprised by the result of a storyline and then finding out that other people who have watched the same programme aren’t surprised at all!I seem to miss out on a whole layer of meaning that other people pick on effortlessly. It’s as if my brain just can’t process it!

This of course leads to issues in daily life. Many times I have been given instructions with inferred meanings and then been chastised for not following these instructions when I did exactly as I was verbally told but didn’t pick up on the subtleties of what was being communicated to me.Just as I can’t understand how people pick up these hidden meanings so effortlessly, other people can’t understand how I don’t pick up on them! I think that this is a large part of what makes communication so frustrating for both people on the spectrum and those around us too.

This lack of ability to understand inference and hidden meanings also means that I don’t pick up on social manipulation the way other people often do. It has to be explained to me for me to be able to see why someone is behaving in a particular way or coming out with a particular rhetoric. This often leads people to assume me as naive (which in itself is a great shame if not understanding social manipulation is seen as a disadvantage but that’s another issue!) These things just don’t enter into my head and I am often shocked at how much of someone’s motives I missed once it is all explained to me.

Oddly enough, I am more likely to pick up on inference when I am reading. I don’t know if this is because it is a solid, predictable format rather than being muddled by noises and faces or whether I can predict how a book is going to end because of how others in the same genre have ended but I can often pick up on someone’s intentions in a novel where I can’t in a TV programme or in real life.

I have a final plea to readers of my blog who are not on the autistic spectrum. Please keep it simple when communicating with someone who you know to be on the spectrum. Be clear and concise and request exactly what you want from us. Please don’t be offended if you don’t make instructions very clear and we end up doing tasks wrong. Try and think why we might have ended up doing the task wrong-maybe rephrase the instruction. It doesn’t matter how intelligent or educated someone with Aspergers is-they can still have specific problems with understanding inference and hidden meanings-please don’t make them feel bad about it. If you do phrase instructions clearly, you will find that the majority of people with Aspergers will do anything that’s asked of them (within reason of course!) You just need to give us that chance. I would be interested to hear the views of other people on the spectrum too as to any issues failing to get hidden meanings has caused them. I look forward to hearing from some of you.

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.

My Aspergers Radar

Like a fair number of people with Aspergers, I have a very effective radar for spotting other people with Aspergers. This is most evident when I am watching programmes on TV. There was a documentary last year which featured several teenagers who were approaching their fourteenth birthdays and had been followed from birth to see how their lives progressed over the years. There was one boy on the documentary whom I could instantly tell had Aspergers before he mentioned that this was his suspected diagnosis. It wasn’t just the fact that he spoke about his history of poor social skills and not knowing how to play with other children in the school playground-it was his physical awkwardness too and his mannerisms. Sure enough, he mentioned that Aspergers was his suspected diagnosis although his family had never gone down the formal diagnosis route. While he may not be officially diagnosed, it was clear to me that he has Aspergers. I have also watched programmes following families on the route to a formal diagnosis and been able to tell instantly that the professionals were going to give an Aspergers diagnosis.

I am also very good at spotting other people with Aspergers in my daily life too. I guess this comes from being so self aware about my own manifestation of the condition and the mannerisms it gives me that I recognise those same mannerisms in other people. However, sometimes I have had suspicions that I am talking to someone with Aspergers Syndrome even when they present very differently from me. I used to attend a support group for students with Aspergers when I was at university and, in my first week there, I would often see students around campus and suspect that they had Aspergers and then see them at the first meeting.

I am not sure what exactly has made my radar so strong and why so many other people with Aspergers also have effective Aspergers radars-maybe it’s a survival mechanism which draws us towards other people who also have trouble fitting in. Everybody needs to feel they belong somewhere and, for a lot of people with Aspergers, the only setting in which they feel they truly fit in rather than merely being tolerated is with other people with Aspergers. Therefore, on a subconscious level, we are drawn towards other people with Aspergers. This happens before we even know what Aspergers is. We often realise we are different many years before diagnosis-I knew I was different from my first day at primary school, three and a half years before I was diagnosed and I was lucky to be diagnosed in childhood. I have read stories online of people who have not received a proper diagnosis until mid adulthood but have always known they are different and seek out similar minded people. I believe it’s an instinctive process but I would be very interested to hear from other people with Aspergers whether they also have a radar for spotting other people with the condition, whether diagnosed or undiagnosed.

I leave you all with one thought-are these radars innate or have they developed as a consequence of the level of isolation most people with Aspergers experience in society? I personally believe mine is innate-I’ve always been drawn to other people on the spectrum but perhaps it is also due to needing that setting where, for a brief period of time, I can actually feel like I’m not different at all. It’s an interesting debate and I would welcome my readers thoughts on this topic.

Aspergers and Fear of Authority

After a little break to get some more ideas, I am now back blogging but will be doing so on a fortnightly basis.

Recently, in the UK, there was a tragic case involving a teenage boy on the autistic spectrum who inadvertently opened a link on his computer which turned out to be a scam which locked his computer and demanded £100 before it could be unlocked or the police would take action as illegal pornographic sites had been accessed. The email appeared to have been sent by Cheshire Police and Joseph became so anxious and distressed over this email believing that he would be arrested that he committed suicide. The full news article is here

http://www.mirror.co.uk/news/uk-news/autistic-schoolboy-hanged-himself-after-5025351

This is the sort of case that people who aren’t familiar with how people with autism think fail to understand. They don’t understand how anyone could fall for such a scam or how anyone could believe that detectives would email them or demand money. As someone with Aspergers, I can understand exactly what went through Joseph’s mind that tragic day. Most people on the spectrum have a fear of authority. To Joseph,it’s highly likely that the idea of having to speak to the police would have felt like the scariest nightmare he could think of. I can guess that because I know how I would feel if I were to ever believe I was in trouble with the police. Most of us are also very honest and don’t understand why people would scam others and how people can be so dishonest so it would have been perfectly feasible for Joseph to believe that the email was genuine. People might say he should have looked at it logically but people on the spectrum don’t think logically when they are anxious. Furthermore, in one article I read, it had claimed that Joseph, like the majority of teenage boys out there, had accessed soft pornography websites in the past so, in the spiralling anxious thought processes occurring in his mind that day, he could have easily thought that the police were referring to these websites. Like most autistic people, Joseph had a tendency to take language literally so it wouldn’t have occurred to him that the email was fake. Another article I read spoke about how his family were in financial difficulties which he was taking a job to help with so, in this context, a demand for £100 is even more anxiety provoking.

Several years ago, I experienced intense anxiety around the idea that I would be arrested for benefit fraud. I was in receipt of Jobseekers Allowance at the time but had a 2 month travelling trip organised which would have obviously taken me out of the UK. Unlike Joseph, I had not received any emails or been told anything of this kind by anyone-I just wildly assumed that, as my holiday was booked, they would imprison me for claiming benefits at a time I wasn’t entitled to. This sounds foolish looking back at it now but, at the time, despite several people telling me that nothing of the sort would happen and that the claim would simply be cancelled if I didn’t turn up twice in a row, I was utterly convinced that I would end up in prison to the point where I attended my local gym once and couldn’t stop thinking about whether there would be any gym facilities in whatever prison I was going to end up in! I was anxious enough without any encouragement-if I had received a letter or email telling me the police would be investigating my circumstances, I don’t know what I would have done so I understand how distressing it must have been for Joseph. Eventually I got a job to start just after returning from travelling so I cancelled the claim before I left the UK and it all worked out fine which was a huge relief! This sort of intense, illogical anxiety is very difficult for people who aren’t on the spectrum to understand particularly as, in a lot of cases, this anxiety doesn’t respond to reassurance, no matter who it is from or how it is phrased. I can look back now at forum posts I wrote at that time and see how illogical the anxiety is and how frenzied my writing was because of how frenzied my thoughts were but, at the time, my mind had convinced me I was going to go to prison, just as Joseph’s mind had convinced him he was going to be arrested.

The most tragic thing about this case is that Joseph took his own life whilst the people that orchestrated the scam in order to get some easy money are unaware that he committed suicide and have most likely targeted lots more people since that fateful day. I hope that Joseph rests in peace and my thoughts are with his family. I leave you all with one reminder-although our anxiety may appear illogical to you and indeed is often illogical, please understand that, for us, at that time, it is taking over our every thought process and that is the scariest thing we have ever experienced. Yes it will fade eventually but, while we are in the throes of our anxious thought spirals, we can’t see that so we need someone to guide us through that without judgement. Joseph’s tragic story illustrates just how all encompassing such anxiety can be in autism.