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.

Advertisements

Gender differences in Aspergers

As a female with Aspergers, I often get frustrated when people neglect females on the autism spectrum and concentrate almost solely on males when writing literature or when carrying out research studies. Official estimates for the male to female ratio of people with autistic spectrum conditions vary between 2:1 and 16:1, depending on which source you get the information from. It is widely accepted by medical professionals that, among those who also have a degree of learning disability, the male to female ratio is not as biased towards males as it is in people who have autism but no learning disability. I personally believe that there are just as many females as males with Aspergers Syndrome but females are extremely under diagnosed for reasons which I will explain in this blog.

This page on the National Autistic Society website gives some fantastic reasons as to why a lot of females are misdiagnosed or not diagnosed at all. http://www.autism.org.uk/about-autism/autism-and-asperger-syndrome-an-introduction/gender-and-autism/women-and-girls-on-the-autism-spectrum.aspx I agree with a lot of their points. What I have noticed is that a lot of women who are on the autistic spectrum struggle with social skills but not in such an extreme way as men can. There is the whole argument that women are wired to be better in social situations than their male counterparts so women with autism, whilst still at a disadvantage, can cope slightly better. A lot of females with autism and Aspergers are natural mimics and can observe other females in social settings and copy their behaviours, meaning that their social skills never get picked up as concerning enough to be considered for an Aspergers diagnosis. Socialising can still cause these women extreme anxiety but they are capable of hiding it well and dealing with the emotional fall out at home rather than in public. Of course, there are men on the spectrum who are also capable of and willing to mimic other people’s social behaviour but this tends to occur a lot more in women. I am not trying to say that females have it easier because they can mimic social behaviour-other women can be extremely harsh about women with Aspergers who are often seen as odd. I have personally found that women are less likely to forgive social mistakes then men and bear grudges for a lot longer when you inadvertently offend them. I am simply trying to point out that those with Aspergers who mimic well can miss out on a diagnosis because they can come across as having good social skills. I have learned social skills over the years but they do not come naturally to me and I know that I come across as very aloof when I am tired because I simply don’t have the energy to communicate with people. This is the aspect of Aspergers that people find the hardest to understand in my experience as people believe that, as they are inherently social beings, everyone else is too and don’t understand how tiring socialising can be for someone on the spectrum.

I find a lot of points on that list resonate deeply with me. I am always happy to socialise with friends but often they are the ones that initiate it. I have, in the past, been scared to enter a room where I know that some of my friends are because I felt very self conscious entering a room alone. I have now overcome this particular anxiety and will happily enter a room and chat to the people in there if I know them but, for years, it was an issue. I have an extremely vivid imagination and had a whole extended family of imaginary friends when I was a child. I used to day dream elaborate stories of their lives and add more characters when I felt that their lives were getting boring! I read fiction books a lot and enjoy visualising myself in the story. I often day dream about entering another world and what that would be like. 

Not all of my interests have been shared by my peers-I don’t know many other women who, during childhood, were obsessed with pregnancy and childbirth and the different makes of pushchairs sold in Mothercare but I do know females with Aspergers whose special interests were shared by other girls without Aspergers-horse riding, dance and baking, for example. The fact that special interests are not noted as concerning unless they are unique says a lot about society in general in my opinion. Why is a special interest in train timetables or Maths seen as concerning and strange whilst a special interest in animals or cooking is viewed as perfectly fine? All of these interests are often obsessive in someone on the spectrum but the first 2 are noticed by society more than the final 2.

I believe that females with Aspergers suffer deeply from the consequences of trying so hard to fit in. This quote sums it up perfectly-“The fact that girls with undiagnosed autism are painstakingly copying some behaviour is not picked up and therefore any social and communication problems they may be having are also overlooked. This sort of mimicking and repressing their autistic behaviour is exhausting, perhaps resulting in the high statistics of women with mental health problems.” (Dale Yaull-Smith, 2008). A worryingly large percentage of adult women on the autistic spectrum have issues with anxiety and poor self image which can lead to certain destructive behaviours. If you live your whole life believing, that as a woman, you must be social and able to interact well in all situations, you inevitably feel as though you are constantly falling short of these expectations. As mentioned before, men, in my experience, are a lot more accepting of social difference even though, initially, it is girls who are more likely to befriend the child in infant school who is eccentric and struggles to make friends. Some women are simply cruel and vicious when it comes to other women who struggle socially and the effects of this can be devastating. 

This YouTube video also describes the manifestations of Aspergers in women very eloquently. Whilst there are common symptoms shared between everyone on the spectrum, to varying levels, hence the diagnostic criteria, there are ways in which traits show themselves in women that are completely different from how they show themselves in men. 

http://www.youtube.com/watch?v=iIgsJ6uSgMo (you can disable the sound if it is annoying you).

I share a lot of these traits and a lot of these traits are not considered by medical professionals because they still think that people with Aspergers fit a narrow stereotype (see my earlier post-Debunking The Myths Of Aspergers). People who are sensitive to criticism and take things personally are not often seen as having Aspergers, for example. Traits such as these can often be exhausting. I often have thoughts racing through my mind and find it very hard to fully relax. I find this video very hard to watch as it reminds me of just how many traits I have and seeing it laid out in this format reminds me of how many issues I live with. It is a fantastic video though-many thanks to Samantha Craft for making these traits widely known.

I know that a lot of people reading this will think, rightly, that males can be under diagnosed too. People who are not diagnosed until adulthood have often learned social skills in order to not become a target for school bullies, regardless of their gender. Other people may think, when watching the video, that a lot of females without Aspergers share these traits too which I wouldn’t disagree with but, like everything, it’s about how often these traits are experienced. 

I guess my main point is that there are a lot of females out there who are living with undiagnosed Aspergers. Perhaps they have been diagnosed with anxiety or Obsessive Compulsive Disorder or various personality disorders and are treated for these but still feel different and don’t understand why. They can often feel highly isolated and struggle with depression because their needs have not been picked up and therefore are not being met. Please have patience with us-this world is an exhausting place and other people’s judgements make it so much harder.

Thanks for reading!