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  • 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.


  • Depression: Child Friendly?

    There are many things in life which are tested for their “child friendliness”. From pubs to hotels, theme parks to holidays, all parents want to know in advance whether their children will be well catered for and will have a good, safe time. There’s one area which hasn’t been investigated though, how “child friendly” certain illnesses you can have whilst being a parent are.

     

    The simple answer would simply be: none of them. Who wants to be ill when they have children? However, some chronic illnesses could quite happily fit in with 21st Century parenting values (yes I may be generalising). Diabetes for example: you have to follow a healthy diet, make sure you eat regular homemade meals and ensure your weight stays stable. This is basically forcing you to do what everyone should already be doing. As long as you follow those rules, take any medication you are prescribed, you should be fine.

     

    I have depression and have done so since I was a teenager. I have had good times, many people with depression do, but it is always there, lurking around the corner, ready to pounce at any time. Quite possibly, the worst “job” in the world to have when you are depressed is being a single parent. I would even go as far to say parent in general, however if you are in partnership with someone, at least you can share the work.

     

    Depression has a significant number of side effects which are far from child friendly:

    1. You feel tired all the time. Children are full of energy all the time. There is no snooze button on a child and when they are young, you can’t really leave them to their own devices; it’s a constant stream of hyperactivity and demands for attention. Of course, when they are in bed and you get the chance to sleep, this is when your brain wakes up and demands attention for itself in the form of rumination and worry about futures which may never happen, and so the cycle continues.
    2. You have very little patience. Children are annoying: fact. You may absolutely adore children, even other people’s but they are, by nature, self-absorbed and irritating. When you add any additional needs your child may have, such as Asperger’s Syndrome in to the mix, this multiplies tenfold. From talking incessantly about obsessions to still wetting themselves at the age of six; meltdowns to sensory seeking behaviour, ASD symptoms can be frustrating anyway. When combined with depression it can constantly feel like your head is going to explode. You find yourself telling your child to “stop talking” or removing yourself from situations as you can feel your temper reaching breaking point. You shout more often than you would like, and had hoped to do while imagining being a parent (personally, I always dreamed of being one of those serene parents who never shout) and you feel yourself turning into the “bad guy” as, when you are a single parent, you do the majority of the discipline. This all adds to the depressive cycle as you feel like a shit parent and start to believe your children deserve better.
    3. General feeling of apathy. This, unfortunately, can strike at any time and affect any part of your life. You can feel apathetic when your toddler falls over in the street, automatically saying “you’re okay” and telling them to “get up and carry on” rather than actually checking to see if they are okay.
    4. Disinterest in food. People with depression can regularly forget to eat, this in turn means they can fail to buy food on more occasions than they would like to admit. This means the children are not eating as healthy or varied a diet as they should be. This is made worse when you know you’re a good cook and know it doesn’t take much effort (technically) to make a healthy dinner.
    5. Having a tendency to over-think things. This itself causes two types of parenting issue:
      1. Over-thinking what it takes to do something, example: “I should take the children to the park. Child with ASD will be hard work as he doesn’t like the idea of going out, toddler may need to nap and get crabby. What if it rains? I have to get the pushchair out of the boot of the car. One child may run in one direction, one in another, who would I go after? What if the toddler poos? What if the older child needs a poo and there isn’t a toilet? What if one is on the swings and the other on the slide? What if… What if… Maybe we should just stay in.
      2. Over-thinking another person’s words or actions, example: Child says “I hate you!” Parent with depression thinks “He’s right to hate me, I’m a shit parent, the children deserve better, I can’t cope with them, they’d be better off with their non-depressed parent.”
    6. Self-harm. This is something I struggle with; I and other people with depression, including parents, will have urges to do this frequently. I managed to stop for a while because my older child noticed the marks and they’d be harder to hide in the summer, unfortunately I have recently relapsed and have started cutting myself again. No child should be a witness to that, however it’s not something people do on a whim, for attention. It is a true side effect of depression, which brings me to the last point…
    7. Suicide. This is the least child friendly side effect of them all. As much as people with depression, myself included, often feel their loved ones, which includes their children, would be better off without them, the overwhelming number of people with these thoughts and feelings still have a small voice telling them that a parent, even them as a depressed parent, is something a child needs. A child’s life would ultimately be made so much worse if their parent killed themselves. I just hope that my little voice, and everyone else’s sticks around and starts to drown out the other one which says that you’re worthless, that the world would be better off without you.

  • Autism

    Autism Spectrum Disorders (“ASDs”) are something I have first hand experience of as my eldest son has an Aspergers Syndrome diagnosis. One thing I have learned while travelling the path of endless appointments, therapies and paediatrician appointments is that ASDs seem to have an inbuilt magnet for bullshit.

    Everyone has their own, often outdated and uneducated, view on what ASDs are; how people with them think and behave and what causes a person to have ASD in the first place. These range from the discredited “research” by Dr Andrew Wakefield in which he claimed that the MMR vaccination caused Autism to the equally uneducated “there is no such thing as Autism, it’s all bad parenting”.

    People are still avoiding vaccinating their children from diseases which kill thanks to Dr Wakefield and as such there has been a significant rise in the number of reported measles cases as heard immunity just doesn’t work if those who are able to be vaccinated aren’t (further information regarding the breakout). Although there have been numerous reports debunking the link between the MMR and Autism (see this one from Harvard Medical School as an example), parents are still so concerned due to the prevalence of Autism myths that they simply “won’t take the risk”.

    Even more ridiculous than the vaccination myth is the one created by PETA that consumption of dairy products causes Autism (link here). Between the two reports it is suggested that if you vaccinate your child while giving them formula (which is derived from cow’s milk), your child has no chance.

    The thing that people seem to be misunderstanding through reading the research (always done against very small groups of children) is that correlation definitely implies causation. If that were true, you could say for certainty that water kills people as 100% of people who drink water will die.

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    Image from http://condoroptions.com/

    In truth, there doesn’t seem to be a single direct cause of ASDs. Rather than the public looking for these reasons in order to avoid them (as realistically it’s likely to be a biological factor in the same way that chromosomal abnormalities can cause Downs Syndrome and DiGeorge Syndrome), they should be educating themselves as to what ASDs actually are.

    If you speak to anyone who has never met someone with an ASD, the first person they will picture is Dustin Hoffman as Rainman. They will say things like “your son must be amazing at maths” (actually he is, but that’s beside the point) and “oh, so he hates to be touched then?” (when in truth, his sensory issues mean he seeks proprioception so absolutely loves really tight hugs). Worse still are the people who once knew someone whose Auntie’s cat’s best friend’s hamster owner had Autism and they did <insert vague stereotype> and your son doesn’t so he can’t have Autism.

     

    It also seems that even the “experts” can’t agree on what makes someone fit into a particular category of ASD. There are numerous arguments as to whether Aspergers Syndrome is just “Mild Autism” (it’s not), whether newly diagnosed people should be given a subcategory at all or if everyone should be lumped together into one big ASD pile.

     

    What I believe is that people should realise that if they know one person with an ASD, they know ONE PERSON with an ASD. Just like with neuro-typical people, everyone on the spectrum is an individual. They have unique likes, thoughts, feelings and behaviours. All have difficulties with communication and social skills, however the severities and manifestations of those difficulties will be just as individual as the person. My son is fantastic with his select friends, if you saw him playing with them, other than a bit of stimming and the fact he can be difficult to understand when he talks if you don’t know him, you probably wouldn’t think he was any different to a typical six year old. Put him in an unfamiliar environment with people he doesn’t know, particularly other children, and he will react in one of two ways. He will have a meltdown (or as helpful people tell me, a temper tantrum that a good smack would sort out) or he will withdraw into himself, either by staying close to me and hiding his face or finding a corner to lie down in.

     

    I think it’s important to know that the ‘S’ in ASD is really the most important letter. It’s a spectrum. You will have people who have issues such as communication on the higher functioning end of the spectrum, yet may have sensory issues on the low end of the spectrum and just can’t tolerate wearing certain clothes or eating certain foods. Just because someone is classed as having Aspergers or High Functioning Autism it doesn’t mean they don’t have elements of that which are genuinely disabling (my son is six and still wets and soils himself on a regular basis and cannot wipe his own bottom properly) and conversely, someone who has Classical Autism and may not be able to speak should not be considered to be any less intelligent than someone who communicates in a typical manner.

     

    Regardless of what causes it, ASD is definitely real, it has nothing to do with bad parenting, it’s not something which can be taken away, it is a lifelong developmental disability. It is also an invisible disability, please don’t assume that the child you are seeing having a toddler style meltdown in the middle of Tesco when they clearly look about 8 or 9 is just naughty, no one “looks” Autistic. However, with the right therapies, early intervention and patience from everyone involved in an Autistic person’s life be that their parents, teachers or the person sat near them on the train while they recite repeatedly the names of the train stations on that particular line in the order of which the train will stop (a particular favourite of my son’s), improvements can be made to social skills, communication and sensory issues so that the person can function to the best of their ability.

     

    For further reading regarding ASDs please click this link: http://www.autism.org.uk/