• Category Archives Random Musings
  • World Autism Awareness Day 2018


    Today, for the first time in years, I wasn’t going to write anything. I have struggled to sympathise with the stories, people, organisations, and even myself, and found that during the build-up to today I had descended into negative thought patterns and self-pity, largely due to everything that’s going on in the land of social media. A day which has previously seen me shout from the rooftops about how autism affects my family and others I care about, has this year seen me confused, bitter, and disaffected by the whole damn circus.

    The day, it seems, has become a battle between two warring factions: autistic people, and everyone else. The war zone is made up of zeros and ones, and the weapons are razor-sharp words fired by frustration and hatred. If the pen is mightier than the sword, then words typed in comment threads are more explosive and destructive than an atomic bomb. As the fight continues about puzzle pieces, whose voice gets heard first, what colour we should ‘light it up’, and which came first, the person or the autism? people are missing the entire point of the day. There is still a horrific lack of services and understanding for autistic people; there is still a vast number of people who struggle to obtain an accurate diagnosis, particularly females and a-typically presenting children; people still truly believe that vaccinations cause autism; and the very real discrimination that autistic people face – in education, employment, mental health services, law enforcement etc – barely gets a mention.

    Don’t get me wrong, it’s not that I feel the people arguing against things like the puzzle piece don’t have a point, it’s that they (and I) have missed the bigger picture by focusing on that tiny element. It can make the campaign look like a bit of a joke, and often completely obliterates any positive messages we are trying to convey.

    We know that Autism Speaks is an evil corporation which is probably headed by a reincarnated Hitler, but not everyone does (yet). Yelling at a mum for using the AS Facebook profile frame when she’s asking the autistic community a valid question isn’t going to make her come back to us. It’s going to make her defensive, stick her middle finger up, and run into AS’s open arms before you can say ‘eugenics’. Perhaps it doesn’t matter if the information seeker has lit up blue, red, gold, or purple, as long as they are asking the right questions, and listening to our answers we will be moving towards our aim of autism acceptance. You can always tag on the end why lighting up blue isn’t helpful, and is certainly not what autistic people want.

    Yes the puzzle piece is a bit of a bullshit symbol, but telling people to actively avoid and decry any organisation or person who uses it, without looking to see what work they do and how they support autistic people and their families, is equally bullshit. Not everyone has the NAS budget to change all their branding overnight, ya know! People have different ideas of what the puzzle piece symbolises, and it seems to be quite different across the Atlantic divide. I know that it’s easy to assume the worst when you see it (and I do remind those around me why that is), but most people don’t have the same connotations with it as Autism Speaks. For some people and organisations it symbolises their desire to help autistics through the puzzle of the allistic world, and the idea that some use it to signify that autistic people have something missing is completely mind-blowing to them. This is where intent really does matter; perhaps establish that before embarking on your seek and destroy mission.

    Let’s be honest here, as much as I agree with, prefer, and use identity first language, as long as what’s being said before or after the ‘label’ is kind, helpful, and honest, does it really matter? Like *really really* matter? By all means reply to whatever is being asked/stated with “this is my constructive answer/response which adds something to the original point/question. Oh, by the way, autistic people prefer person first language because autism isn’t separate from us, and is part of our identity, just like someone is Welsh, not ‘with Welshness’.” Stop replying with “don’t help this person who’s trying to learn because they wrote words down the wrong way, and I don’t like it.” Of course people need to listen to autistic people more, including the way in which we like to be addressed. Perhaps they will start if we welcome them with the patience, kindness, and understanding we expect from them.

    Everyone please remember that parenting autistic children can be very hard. Vilifying desperate parents who just, for example, want to learn how to manage behaviour they find challenging is a dick move. Save that for the cure hunters, vaccine fear-mongers, and conversion therapy (read ABA) touts. Of course, if something that’s been said is hurtful you should point it out. But again, intent matters here and if someone doesn’t realise why what they’re saying is bad, don’t yell at them for it, explain (nicely) why, and they are more likely to remember it and not get defensive.

    The things I have highlighted are definitely important, but they are *not* more important than equal access to diagnosis, changing the education system so autistic children don’t end up refusing to go due to horrific anxiety, why functioning labels are unhelpful, and that autistic children become autistic adults. They’re not more important than pointing out the lack of services available to help autistic people (particularly in adulthood), that abuse of autistic children is excused in a way that would never happen with allistic ones, that there’s a huge number of autistic parents of autistic children (like me) who are doing the best they can in a system that’s not set up for them or their child(ren), and that there’s a fucking measles epidemic (again) because people wrongly think that vaccinations cause autism and autism is more scary than a child dying. Let’s focus on what’s really important here, and put in the other things as footnotes and addendums.

    Most of us have a limited amount of energy to devote to the cause. It’s exhausting, and we’re not even necessarily allocating that energy wisely. So maybe we can put down our weapons; use the rest of the week as an armistice. Lift up autistic voices, spread science not hate, and answer questions honestly and empathetically. Let’s educate, not berate. To those who say that people won’t learn or listen if we’re calm and nice about it think about this: that is what some people say about autistic children who are being failed by the education system. They say that the autistic children don’t listen, and the only way to teach them is to resort to extreme methods (again, read ABA). We all know that’s complete balogna, so why are we doing the same thing?  Yes there are loads of people yelling their anit-autism hate speeches and generally being douches, but they are mainly in their anti vaxx echo chambers, locked away where they belong. They may be publicising their locked-down chamber, but thankfully most people disagree with what they’re saying and are pretty vocal about it. Let’s not stoop to their level. We’re better than that; we’re autistic.

  • Housing Crisis, Me?

    On Monday of this week, I received news that nobody who rents wants, but everyone fears. My landlord is selling up, and I have to go.

    I’m on a training course when this phone call is taking place; luckily, it’s with my Autism Puzzles family. I start the conversation about what needs to happen quite stoically, by the end of the call, tears were running down my face, but I was determined not to let on to my landlord. Who knows if I was successful. My team showered me in hugs and words of support, and immediately I had people asking me how they could help.

    I posted news of my woes on Facebook – I’m a 30 something in the 21st Century, of course I posted it on Facebook! The outpouring of support, and offers of practical help have been completely overwhelming. I’ve spent a lot of my adult life in very isolated social circles, and when I separated (amicably) from my husband, I initially became more isolated still. My horrendous mental health issues (still working on them, but doing a pretty damn good job) and my innate introversion made connecting with people at that time (May 2014) almost impossible. I’d become a full-time carer to the boys (due to special needs), had a brilliant best friend, but not much else by way of friends, and an intense fear of going out to do things. I also wanted to die. A lot.

    Over the past few years my support network has grown exponentially, and this current crisis has demonstrated this by the gallon! I’ve had so many people offer a roof over my head if I don’t find somewhere to rent before I must move out, and I’ve had more than one offer to be a guarantor. Almost everyone I’ve spoken to has asked how they can help, and I’ve had countless people say they’re happy to shift boxes when the time comes.

    The problem is, regardless of my income, and the fact I’m a pretty decent and clean person (well, since reading the book “How to Unfuck Your Habitat”) landlords fear me. You see, I’m on housing benefit. *Cue sinister music*

    I have been looking for two days (not long I know, but ye gods, I don’t have much time), and in that time I’ve been interested in about 9 properties, had 5 rejections before I even stepped foot through the door, 1 viewing which I liked but the agent isn’t sure the landlord will accept me, and the rest haven’t come back to me. I have more than enough money to pay, I have almost three years of rental payments and six years of mortgage payments to prove that I can pay on time without defaulting, AND the ability to secure a guarantor. This, however, isn’t enough for the “elitist Tory bastards” (Jones, B, 2017). This is making the whole process unbelievably stressful.

    I have had mental health issues on and off for the majority of my life, and am very black in white in my thinking (even though not everybody sees this). Due to this, my brain hasn’t got appropriate disaster reaction transmitters.  I keep getting brain flashes of suicidal ideation, as this is how I’ve dealt with crises in the past (whilst this sounds flippant, if you read my blog posts from 2014/15, you’ll see this was no laughing matter). I can immediately have a word with myself now, and know that it’s just because I need to build new pathways. This will do that – eventually.

    If this crisis had landed a year ago, there is a strong possibility I wouldn’t be here. The reason I have come so far is not, contrary to what my close friends say, because I’m superwoman. It’s because of the people I have in my life right now.

    The mums on the school run who I’m now confident to speak to, all the people who I’ve met through my wonderful best friend, and in vast quantities my Autism Puzzles family. Thank you, each and every one of you. I may be facing homelessness due to the housing crisis, and landlord’s inability to open their minds to the possibility that people on benefits are capable of paying for and maintaining a property, but I’m definitely not facing it alone.

  • Why’s Matty doing that?


    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.




    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.

  • Home

    When I think about the mind, it reminds me of an old house, dark and decrepit. The paintwork on the façade is cracked, peeling, scorched by the sun, and battered by the winds of the past. It is uninviting, but somehow draws you in, like a moth to a flame.  You can’t help but walk up the splintered steps to explore the inside.

    The heavy wooden door is slightly ajar. You feel your heart quickening in your chest, the blood pounding in your ears like a beating drum. You struggle to catch your breath; you want to turn away and flee like so many others before you, but you know you must go on.

    The corridor is long, dark, and dusty; a path which hasn’t been walked for a long time. Your footsteps echo as you go forward, dust billows behind you, and cobwebs snatch at your face like ghostly fingers. You see movement ahead, you slow your pace in trepidation, yet you know you must continue.

    Two figures appear in the dark, shadowy and sinister. As you approach, you notice that one figure is cowering low to the floor, hands raised as a shield, to protect itself from the words spouting from the other. The figure doing the talking is tall, and menacing. It has no face, yet words keep coming from the place where its mouth should be. You hear it calling the quivering figure weak; telling it that it is worthless, stupid, and unloved. It spews out nothing but hatred, every vile insult sparks something inside you, and you break into a run determined to protect the whimpering figure on the floor.

    As you get closer, you hear more of the bile; you see clearly the figure on the floor. Realisation washes over you as you see that the frightened figure is yourself. You are naked, vulnerable, and uncomfortable. You hear what is being shouted by the taller figure, and realise it’s every worry, every self-doubting moment you have ever had. You stop, and realise the figure is the part of your brain which feeds all of your self-doubt, your fears, and your anxiety. You stare at the figure, and notice that as you do, it begins to become smaller. The realisation that it is a manifestation of your fears rather than an entity which can cause harm makes it seem less frightening.

    You stand and watch, listening to the figure and realising that although it may say things which are hurtful, you can choose how you react to them. You approach your trembling self, and hold out a hand. It places its hand into yours, and you stand united against the negative thoughts and feelings. Together you watch the figure twisted in its hatred, and choose to let the words wash over you and away. In the same way that no two drops of water are the same in a waterfall, no two thoughts are the same, and they will pass quickly. The figure continued to shrink, and as it did, the house began to fill with light. The corridor widened, and the cobwebs vanished. Warmth spreads throughout the house and you walk back towards the open front door. As you look back, you see yourself sat peacefully in the warm light, and you know you are free; you finally feel at home in your own mind.

  • You should love your hobbies.










    Apple Banana

  • 2014 – The Summary

    How much can happen in a year?
















  • Conveyance of emotion through song






































  • Autism







    Image from http://condoroptions.com/
















  • 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.