• Tag Archives communication
  • Why’s Matty doing that?

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    This is my son Matty, he has an Autism Spectrum Disorder (“ASD”). Looking at the photo, he looks like any typical nearly eight year old; this is because ASDs are invisible disabilities. As April is World Autism Awareness Month, I thought I’d share a snippet of  Matty’s life, along with some more general  information for those who wish to read it. A frequent question I’m asked by children is “Why is Matty doing that?” usually referring to flapping, talking to himself, or putting his hands over his ears, hopefully this post will help answer some of those questions.

     

    Nobody looks autistic, it’s a neurological disorder which affects all who have it in different ways. I’m lucky as my son is verbal (although his speech sounds immature, and his language development is behind for his age) and he’s relatively high functioning. Unfortunately, the media portray high functioning autistics as people who are just a bit quirky, geniuses in their own right who don’t seem to have many struggles. It is assumed that characters such as Sherlock Holmes, Dr Spencer Reid (Criminal Minds), Sheldon Cooper (Big Bang Theory), and Will Graham (Hannibal – TV series) have autism, although this has never been explicitly stated in any of the series. The combination of poor social skills, unawareness of how their actions affect others, and being utterly brilliant at what they do make every couch psychiatrist scream “Autism” or “Asperger’s”. These are, whether intentional or not, false portrayals of a very small group of people on the spectrum.

     

    My son has sensory processing disorder (“SPD”), a very common co-morbid condition with ASDs. He seeks proprioceptive input; he doesn’t have any awareness of where his body parts are in relation to the space around him. He also can’t feel his body parts unless he’s moving or touching them. He also has hypotonia and hypermobility which don’t help. This means he stims (self stimulates); his favourites being jumping and flapping; and he can’t stay still (at his most still he still constantly wiggles his toes). Stimming is a very common symptom of SPD and ASD alike, although not everyone with either of these conditions will have stims, and not all stims are the same. Some can be as subtle as gentle rocking, finger counting, and rubbing the thumb and forefinger together; others can be as noticeable as spinning in a circle, clapping hands together repetitively, and Matty’s jumping and flapping. It is important to remember that someone who stims cannot stop this behaviour, it happens for a reason. They either can’t help it, it’s a reflex in the same way breathing and blinking are, or it is behaviour to help them keep calm in an environment which is not comfortable for them. It can also be a way of demonstrating pleasure and excitement, in the same way a neuro-typical (“NT”) person would laugh, smile, or verbalise their happiness.

     

    Matty can be sensitive to noise (which is why he will almost certainly have his hood up, regardless of the weather, indoors and out), but not his own. He has no volume regulation, and constantly narrates what he’s doing (basically that inner monologue we all have, for Matty it’s not inner).  He also has echolalia and will repeat phrases he has heard in games, films and YouTube videos. This is, again, something which is common amongst verbal autistics, although will not  present in all cases. Some autistics who are classed as non-verbal will also speak using echolalia, but they have no functional language to engage in conversation or to verbalise their needs.

     

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    Matty struggles socially, he can’t read non-verbal communication (facial expressions, tone of voice, body language), he doesn’t know the “rules” of having a conversation and will interrupt, change the topic of conversation to what he’s interested in, walk away when you’re mid-sentence because as far as he was concerned, that was enough talking, he struggles with eye contact and will completely shut down if a social situation gets too much. Social impairment is a major diagnostic criteria for ASDs; if a person has any form of autism, they will definitely struggle socially. This can be masked very well by high functioning autistics, particularly females and in adulthood, but it doesn’t mean that they don’t struggle. Social interaction is hard work, autistics can appear aloof, uninterested in what is going on, overly intense in some situations, and sometimes rude. Please remember that it is not intentional. Where a NT person may easily be able to read someone’s facial expression and realise they’re either bored, annoyed, or want to have a turn to speak, a person with autism will either struggle, or be completely unable to do this. It is important to be patient when interacting with people on the spectrum, and to acknowledge that if they offend you, it will usually be unintentional (although I’m a firm believer in explaining to the autistic person in a way they would understand that they have upset someone, after all, it is only through education someone can learn).

     

    Matty, along with most people with an ASD, needs routines to be strict. He doesn’t cope well with change, and suffers from anxiety. It is important for all people who struggle with this to be made aware of any routine changes as soon as possible. A holiday must be planned well in advance, and the autistic person informed of where, when, how, and why they are going on a  regular basis. Matty’s first holiday (pre-diagnosis) was a complete disaster. We went to Bluestone in West Wales, which meant we didn’t even leave the country, yet he was a nightmare the whole time we were away, and had many “tantrums” during our stay. Matty’s first holiday post-diagnosis (which was also his first holiday abroad) was much more successful. We were able to talk through his anxieties, talk about aeroplanes, what sort of food he’d have, what he would do each day, who else was going, and other factors which may seem completely unimportant to your typical child. When Matty is preparing to change school year, he has more settling in sessions with his new teacher, and his SENCo helps him create a social story to read over in the summer holidays which has photos of his new classroom, teacher, teaching assistant, cloakroom peg, and details of what sort of things he’ll be learning that year. If Matty has a sensory overload: it’s too loud, too smelly, he’s had to sit still for too long; or if his routine is changed suddenly: roadworks causing a diversion from our usual route to places, plans have to be cancelled, or new plans have to be made; he has meltdowns which can last for a long time and leave him completely exhausted. While we have done a lot of work to prevent this from happening, and his meltdowns are reduced in number compared to pre-diagnosis, once he is in meltdown, it is very difficult to bring him out of it, and they can be both frightening, and (I’m ashamed to admit) when in public, embarrassing. When your tall, nearly eight year old is on the floor of a supermarket, screaming and crying because you said you were done, but suddenly realise you’ve run out of milk, I can say, with certainty, we as a family are judged. I feel an overwhelming urge to tell the rubberneckers that Matty is autistic, although it’s actually not any of  their business. Please keep in mind, that if you see a child behaving in such a way, the parent will be, in 99.9% of cases, doing what needs to be done to calm the situation down. I will start with deep pressure and talking to Matty, but often, the kindest and most useful thing I can do is just to be with him until it’s over, without, or with minimal, talking.

     

    While I discuss his diagnosis on a regular basis as I’m an advocate for autism awareness, Matty is far more than just his diagnosis. He is a child who is funny, loving, and extraordinarily  bright with a fantastic memory. He is kind, empathetic (where his condition enables him to be), and generous with his friends. He is my son, and I’m proud of who he is.


  • Conflict

    Conflict is something I have always run away from in the past. It frightens me, my imagination runs wild and conjures up endless possible outcomes from the downright ridiculous (the world will actually explode) to the not totally irrational, but in most cases equally ridiculous, the person I have the conflict with will physically hit me or scream at me if I say what’s on my mind. As such, I have spent the majority of my life quietly agreeing with the people closest to me, trying to avoid arguments.

    This will come as a surprise to most people who know me. I am very vocal about a lot of important topics and will argue points regarding religion, feminism, equal rights and politics until I’m blue in the face. I remember offending many of my (possibly ex) friends as I told them they were absurd for not agreeing with the allowance of female fire-fighters. They posed the question: “Who would you rather rescue you, a man or a woman?” My response was reasonable, whoever had passed their training and was more qualified for the job. This is one of many examples of how confident and opinionated I make myself out to be, the mask I hide behind.

    Matters of relevance and importance to my personal life, those are the conflicts I hide hid from. Relationship conflicts, what money can be spent on, what to eat for dinner, who stays at home with the children and who goes to work, going out. Things which seem completely insignificant to most, I would be genuinely terrified of speaking up about. I would bury my feelings and oppositions to decisions made, all the while becoming resentful of the other party and destroying my sense of self worth and confidence.

    Change occurred when I substituted the word “conflict” for “communication”. Communication is key to relationships, good and bad. Unfortunately, if you do not have a relationship based on honest and open communication from the start, by the time you realise its importance it’s often too late to save. There are too many resentments, too many insecurities and a major imbalance in the dynamics of the relationship. In the case of my relationship with my husband (from whom I am currently separated), we lacked basic communication skills and as mentioned above, I became completely resentful of him. We are now in a position where he wants to reconcile and make things work and I am struggling to get past every thought, feeling and action which negatively impacted on my mental health during our marriage. He is aware of this and I frequently talk to him and explain I am not in the same place as him regarding our relationship, however this is not something which comes naturally to me. Inside I am screaming “run away! Tell him a comforting lie rather than the inconvenient truth!” I’m sure this wouldn’t be the case if we had based our relationship on communication and (to steal an idea from a very good friend) held weekly relationship meetings to discuss any issues, resolve them and move forward.

    I have made a promise to myself that I will never again act on my fear of speaking out and saying how I feel. I can’t promise myself I won’t be afraid in the first place, I am sure that will come with time. I am slowly learning that another person’s happiness is not more deserved or due than my own and that hiding from external conflict only creates inner turmoil, something which is much worse.