• Alpha-1

    Over the years I’ve written a lot about life as an autistic family. It’s no secret that it’s something I’m passionate about, but it’s also something I’ve acquired a lot of knowledge of over the years, both in a personal and (albeit voluntarily) professional capacity. Alpha-1, however, is incredibly new to us as a family, and we’re still in the dark about a lot of it due to NHS waiting lists (thanks austerity) and the fact that there is relatively so little known about the condition. However, November is Alpha-1 awareness month, so I’m going to take you on a little journey of what I know, and how it came into our lives in the first place.

    Aaron has been a bit of a medical enigma since he was a baby. Compared to a lot of disabled folk, it’s pretty low-level, but nonetheless he has an amalgamation of different symptoms and conditions which has meant he’s been under paediatric care since he was small, and has had a whole host of specialists poke and prod him while they try and make sense of what’s going on. A quick run-down of the difficulties Aaron faces (or has faced in the past) include: no suck reflex when he was born, hypotonia, marked hypermobility, global developmental delay, and gastro-intestinal dysmotility (amongst other things, but these are the main points). He’s also a child who used to get very ill from simple viral infections, so we spent quite a bit of time going back and forth to the hospital spending days at a time on the wards on a semi-regular basis.

    Due to his low muscle tone and lack of gross motor development, when Aaron was around 18 months old he had some blood tests to check his CK level to rule out muscular dystrophy, and at the same time a general blood screen was completed to see if there was anything else going on. His CK level was thankfully fine, but his liver function test was abnormal. As the numbers weren’t horrific, and as previously mentioned he was ill *a lot* at the time, it was put down to a likely recent infection and we all forgot about it.

    Fast forward to 2017 and Aaron was hospitalised for severe faecal impaction. The x-ray of his bowel was completely white, and he was vomiting everything that tried to go down, including water. As he was so unwell the medics did a range of blood tests, again just to rule out anything sinister going on which could have been lurking in the background. His liver function tests came back abnormal. Again, it was put down to him being unwell at the time, and a follow-up appointment was made to have the bloods repeated so the medics could see them coming back down. They never did; not to within normal range, anyway.

     

    At this point I’m going to digress slightly. When you or your children have illnesses or disabilities, you’re always told about how it could be worse. About how the worst won’t happen to you or your child. That you need to “think positively.” In today’s world you’re not allowed to do anything other than put on a brave face, and if you try to talk about possible outcomes (regardless if you’re doing it just to prepare, or if it’s for a pity-party) you get shut down. Usually with kindness, but shut down regardless. I prefer Seneca’s approach of thinking and talking about all the possible outcomes, including the negative ones, but it doesn’t seem to go down too well.

     

     

    So, as Seneca would, I started talking to my friends and family about Aaron’s liver function and wondering what could be going on. Most told me it was probably his normal, and that of course there’d be nothing wrong with him and it doesn’t help anyone to think that there could be. I doubted myself, started panicking that I was a hypochondriac, and at one point seriously started asking those closest to me if I could possibly have Munchhausens. All I was doing was looking for an answer as to why his liver tests had never been within the normal range, but talking about it and the well-meaning dismissal of it being of any relevance just made me feel like I was insane.

    Spring of 2018 was turning into Summer, and Aaron had started collecting paediatricians. The doctor who was overseeing his liver tests advised me she was going to do two more tests, just to rule them out. Once they came back negative she was happy to discharge us back to Aaron’s main paediatrician as it was probably just his normal. One test was for Wilson’s Disease, the other for Alpha-1 Antitrypsin Deficiency. As per my personality and thirst for knowledge, I started reading up on both conditions. Each was lifelong, had potentially horrible outcomes, and little treatment other than trying to minimise progression. Again, as I tried to talk to people about it, their overwhelming positivity made me feel like I was reading too much into things (literally) and I started doubting that voice inside my head that was convinced it was one or the other. We were told in a team around the child meeting in school during the summer term that his Wilson’s test came back negative, but that Aaron’s Alpha-1 levels were low and they had sent the sample off for genetic screening. Again I read as much as I could about the condition, all the while being told to think positively, and that he wouldn’t have it or even if he did, it wouldn’t be bad…

    In July 2018 I was CC’d into a letter sent to a paediatric heptatologist in Kings College Hospital in London. Aaron’s phenotype was back: ZZ, with a serum level of 0.3 or less.

    At this point that would make no sense to anyone without a knowledge of the condition. Heck, you probably don’t know what Alpha-1 even is! So here’s a quick run-down:

    Alpha-1 Antitrypsin (A1A) is made by your liver which releases it into your bloodstream to coat your lungs to protect them against neutrophil elastase (NE). NE is released by your white blood cells to help fight infection, but they’re not particularly fine tuned and will attack healthy lung tissue if not kept in check. It’s the A1A that keeps the NE in check, so when you have a deficiency healthy lung tissue is attacked each time your body fights an infection or breathes in smoke and other fumes.

    Image produced by the Alpha-1 Foundation

    Most people have a phenotype of MM. This means you don’t have Alpha-1 Antitrypsin Deficiency and your body works as it should (in this area anyway). I’d still advise you to stop smoking if you do though, that’s not good for anyone.

    Carriers (which myself and my ex-husband both are at the very least) have a phenotype of MZ. This means we have one healthy gene and one faulty one. It’s unlikely that we’d have issues relating to this, however as A1A is a co-dominant gene type (i.e. you get 50% of your function from each gene), it is possible. We definitely shouldn’t smoke (Mike, I’m looking at you) and we have a 50/50 chance of passing on our faulty copy of the gene on to our children.

    Full-blown Alphas have a phenotype of ZZ. Both copies of the gene are faulty and as such, their deficiency in A1A is marked. Your body requires a serum level of at least 0.8 to provide any protection at all to your lungs, as mentioned earlier Aaron’s is 0.3 or less. This places the person at very high-risk of COPD early in life – like, at age 30 early. With the Z mutation, the A1A that *is* produced often gets trapped in the liver as it’s misshapen causing liver issues, potential chirrosis, and liver failure. Many are dependent on oxygen early in life and the worst-case scenario for a ZZ Alpha is double lung and liver transplants.

    Table produced by Think Alpha-1

    (Note – there are other phenotypes including another common faulty type of S, but I’m being deliberately simplistic in the hopes that someone with no connection to the condition will have a read.)

    We’ve been advised to keep Aaron as healthy as possible, which is good advice anyway, but we need to pay a bit more attention to his health, and need to take more preventative steps than you would for a typical child. This in itself is hard. As the lung and liver damage caused by the condition is cumulative, it’s proving incredibly difficult to get people to understand *why* I’m having to do this. Yes, him getting a chest infection now isn’t going to mean he needs a transplant, but each cold, infection, second-hand smoke inhalation etc adds just that little bit of damage to his lungs. Each particle of A1A that gets stuck in his liver is one more that could contribute to scarring. I need to think about the preventative protection a bit like a pension plan. You don’t see the benefit now, it’s much later.

    There is absolutely no way of knowing which Alphas will be the ones who get really sick. None at all. We are incredibly lucky that he’s very well, and that he was diagnosed as a bit of a red herring while the doctors were looking into his other medical problems, but I want to keep him healthy and to do so there are some things we as a family need to do. I need to make sure our home doesn’t get damp. I need to ensure nobody smokes around Aaron, and that he never smokes when he’s older. It’s not advisable that he drink alcohol, and there are certain cleaning products and other chemicals that he needs to avoid as they’re absorbed through the skin and can affect the liver. There are jobs he shouldn’t do (working on a building site for one – an Alpha I’ve chatted to online is in his 30s waiting for a double lung transplant from working as a builder) and he really *really* needs to be prevented from getting chest infections, so colds, flu and other coughs are to be avoided as much as possible too. But me talking about this, or preparing myself for possible outcomes, gets me labelled as “negative” yet again. I promise I am not being negative. I’m using the information I have to get the best possible outcome for Aaron, and actually in cases like this, thinking positively that he wouldn’t be the person who gets really sick means that you become lazy in your protection. You let people smoke around him, you don’t go to the doctor when he’s coughing up green. Then years later you ignore the yellow tinge to his eyes and the swollen belly, the struggling for breath when he walks up a flight of stairs, and the thing you were told to stop being so negative about has happened.

    For now we’re just concentrating on trying to get Aaron-centric information,  which should be available once we get to see the specialist. Until then, his GP has advised we err on the side of caution, so my aplogies to the positive thinkers if I appear to be too negative or overprotective at the moment 😉 . Myself, Aaron’s dad, and his brother also need to be tested to see what our phenotypes are. It’s possible that the wider family will too, but we’ll cross that bridge when we come to it.

    If you’d like to read more about Alpha-1, here’s a list of sites that I’ve found helpful:

    British Lung Foundation 

    Great Ormond Street Alpha-1 Factsheet

    Child Liver Diseases Org

    Alpha-1 UK


  • Breaking News: Another allistic celebrity is doing a TV programme about autism!

    Recently the internet has been awash with praise and adulation for ‘brave’ Paddy McGuinness and his wife Christine since they announced their documentary about ‘being a [parent] to children with autism*.’ This has followed Paddy’s appearance on John Bishop: In Conversation With… in which (from what I’ve seen in clips posted to Facebook and feedback in the comments threads) he cries and waxes lyrical about how hard it is to ‘have two children with autism’ and ‘the fear that the youngest has autism too.’

    It’s only a matter of time before I start being asked , what I think of it, or if I’m excited, but to be honest I just feel dread in the pit of my stomach mixed with a smidgen of nausea. Autism has become another commodity: the en vogue tragedy for celebrities to cash in on and it’s really uncomfortable to see. Before you cry out ‘but he’s raising awareness and is brilliant for it’ stop and read the rest of this post explaining why this sort of ‘awareness’ is incredibly damaging to the autistic community:

     

    The wrong voices are being elevated

    It’s the age-old problem faced by the autistic community: parents’ voices are raised higher and higher; they are the faces of awareness campaigns and are touted as the oracles of autism knowledge to whom new ‘autism parents’ are sent on their information gathering pilgrimages. Whilst there are a number of autistic speakers, there are very few autistic speakers who are also parents to autistic children,  who are (probably) the best placed people to speak about a range of topics relating to autism and its co- occurring conditions.

    When autistic people do speak out, particularly regarding their pride about being neurodiverse, they’re quashed by the ‘autism parents’ whose chants include ‘you’re not autistic like my child, you have no right to speak for them’ and ‘you’re not autistic’ and ‘you don’t know anything about us’ followed by a sweeping statement about the autistic person implying they know everything about them based on a single (usually online) interaction. I’m not entirely sure they see the irony of elevating their non-autistic parent voices above those autistic people’s who they claim aren’t autistic enough, but there you go. The reason they tend to elevate other allistic parents’ above autistic voices leads me into the next point…

     

     

    It’s always negative

    Okay, always may be a bit hyperbolic, but not much. The voices being lauded are bellowing out about how hard autism is, how it ruins lives, how they wouldn’t wish it on anyone. That alone is enough to make even this emetophobe want to vomit, but what’s worse is they’re not even talking about the autistic person in these cases; they’re talking about themselves! The parents! Autism is hard for them, their lives are ruined, the child they imagined having was ‘stolen by autism.’ There is seemingly no consideration for the autistic person themselves who may, in fact, be completely happy with their lot. Or perhaps they are struggling with co-occurring conditions such as anxiety, depression, or learning disabilities, but that doesn’t make the autistic life any less valid or valuable, and it certainly doesn’t give their family permission to publicly cry ‘woe is me’ in order to gain fame, money, validation, or all three.

     

    It’s not accurate

    Many of the ‘autism parents’ are so wrapped up in their version of what autism is, they forgot to find out what the objective reality is. It’s a life-long neurodevelopmental condition affecting social communication. The most common traits include a need for routine and stability, sensory processing differences (although this isn’t a diagnostic criteria), social communication difficulties (with many autistic people having speech and language delays), and difficulties with executive function. Autism isn’t a learning disability (although there are lots of autistic people who also have a learning disability), it’s not something you grow out of, and it’s certainly not caused by vaccinations (I actually can’t believe I still have to write that one). Functioning labels have never been part of the diagnostic process, and the reason that support levels have been introduced in the DSM-5 is to easily identify those who have significant disability caused by another condition the person has, e.g. a learning disability.

    Repeat after me:

    Verbal ability and intelligence do not mean that an autistic person has it easy and is just ‘quirky’.

    Non-verbal certainly doesn’t mean unintelligent or uncommunicative.

    Learning disability doesn’t mean unhappy and worthless.

    Going back to ‘you’re not autistic enough’ and the other tripe spouted by ‘autism parents’ online and in articles: just because someone can write a blog post or compose a tweet, it doesn’t mean they are less autistic. It doesn’t work like that! In fact, if you insist on using an arbitrary scale of ‘autisticness’ with only the non-verbal autistics having a valid diagnosis, you should know that many of those tweets and blog posts come from non-verbal autistic adults (and probably should let psychiatrists, paediatricians and professors know that you can diagnose, or more specifically remove their diagnosis, based on a single online interaction as you’ll save them a lot of time and money; you must be so smart!)

     

    There are a host of other reasons I feel uncomfortable with the current ‘awareness’ shows and campaigns, but the three points I’ve covered are the main ones. Instead of yet another celebrity talking about how hard their life is because they have autistic children, or an infographic written by Autism Mom 37 about how vaccines stole her child and the only way to cure them is to shove bleach up their backsides while removing all gluten and casein from their diets, why not have a television programme about a family where all members are autistic? Show the highs and the lows (I’m not going to pretend it’s all sunshine and rainbows, but at least listen to why it’s not from an actually autistic person); capture the joy of a family stimming together while sharing their special interests; portray the difficulties faced when all members have sensory differences that clash, and the ingenious ways they get around that; show real life as an autistic person, and stop lifting up the wrong voices. And for the umpteenth time: please call us autistic, we don’t carry autism with us and we’re pretty fed up of having to ask you to use the correct language.

     

    Autistics all have a voice, are you willing to listen?

     

    *Deliberately used person first language here as this is how the programme is being described. It should have been the first alarm bell really.


  • Amy’s Gluten Free Rice Mac & Cheese

    I’ve been diagnosed with Coeliac Disease for about four years now and have never been able to eliminate gluten from my diet for longer than a week at a time. There’s a number of reasons for this: executive dysfunction, time, inclination, cost and taste, but my health has taken a decline and I need to seriously take care of myself.

    I’ve worked through the reasons, and have come up with solutions: don’t be too proud to buy ready meals, ignore price tags (but also try to get some basics on prescription), actually try new things and keep a record of what tastes good, and what’s bloody awful. The latter part is going to be recorded here on my blog so a) I can’t lose my verdicts and b) someone else with Coeliac Disease can take a look and decide whether something is worth trying themselves.

    First up is Amy’s Gluten Free Rice Mac & Cheese.

    Where’s it found?

    Tesco freezer aisle.

    How easy is it to cook?

    It’s cooked from frozen in either the microwave or oven. I chose the microwave because it’s quick and easy – it was ready in fewer than ten minutes.

    What’s it like?

    It’s actually alright. If you’ve ever had the Heinz tinned mac and cheese it’s a little like that. It’s stodgy, has a slightly strange powdery feel mixed in with the stodge and is *very* cheesy, but it’s a lot better than I expected. I wouldn’t want to eat it too regularly as I think I’d feel pretty sick, but as a quick and filling meal it’s definitely a good freezer filler. I’d say it’s a lot closer to its company promise than most gluten free fare.

    Rating: 3.5/5 – Would buy again

     


  • 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?

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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.


  • It’s all about the BPD baby…

    EDIT – I have since had this diagnosis retracted, and have a combined Autism Spectrum Disorder and Attention Deficit Hyperactivity Disorder diagnosis. I’m leaving this post up as I felt like this at the time. It is also very common for women with ASD/ADHD to get misdiagnosed with BPD. If your emotional lability and “manipulative” tendencies only appear during depressive episodes (as is the case with myself), it CANNOT be BPD.

     

    Before Christmas, I got diagnosed with Borderline Personality Disorder (“BPD”). ‘What’s that?’ I hear you ask. It’s a mental health condition which causes a range of symptoms, including:

     

     

    • overwhelming feelings of distress, anxiety, worthlessness or anger
    • difficulty managing such feelings without self-harming for example, by abusing drugs and alcohol or taking overdoses
    • difficulty maintaining stable and close relationships
    • sometimes having periods of loss of contact with reality
    • in some cases, threats of harm to others

     

    (NHS, www.nhs.uk/Conditions/Borderline-personality-disorder/)

    This diagnosis, once I had completed my own research, doesn’t come as much of a surprise to me. I have always had (technically) unreasonable emotional reactions to things which happen in my life, from crying for over an hour solid because someone cancelled plans to have a coffee with me, to trying to kill myself because the guy I wish I was dating slept with someone else.

    What most people don’t seem to realise, however, is that I have absolutely no control over this. I can appear to be manipulative, I am extremely impulsive, emotionally labile (not just with negative emotions, I have been known to laugh until I can’t breathe at something that’s only slightly funny to most), often believe I wasn’t supposed to ever exist, and have severe rejection issues. While I know that many of these thoughts and feelings are irrational, they are all consuming and when I’m at the extremes of my emotions, it’s like another person has taken over and I’m watching from the sidelines.

    When I was working, I was the team member who, although good at their job, struggled to maintain good relationships with co-workers. I could be snappy, cried extremely easily, and often behaved in an unprofessional manner, shouting at people when I was angry, and having to run off to the toilets when I was upset. What my former colleagues won’t realise is I found all this behaviour just as frustrating as they did. I wished more than anything that I could remain in control of how I was feeling, and not be “that person”.

    I had similar experiences in school. I’d flit between social groups, never becoming a fully integral member of any of them, and with some members of those groups, loving them one minute and hating them the next. I would panic if I didn’t have plans with people for lunch, in sixth form I skipped lessons if I didn’t have a friend in them (and therefore screwed up my A-levels) because I was so scared of having to sit on my own, and was generally an emotional mess. I felt like I didn’t fit in anywhere, but was terrified of being alone. I would become extremely clingy with some people, and wasn’t able to understand why they’d want to do something without me. These are issues I still face in my daily life.

    As many as 80 percent of people with BPD have suicidal behaviours, and about 4 to 9 percent commit suicide. (NIMH, www.nimh.nih.gov/health/topics/borderline-personality-disorder/)

    I have attempted to take my own life at least six times, after each of these attempts I was taken to hospital, usually in an ambulance, always with the same outcome. My feelings were minimised, most attempts were recorded as “accidental overdoses”, and I would say anything I could to the on call psychiatrist to get them to discharge me. I also have a long history of self harm, yet after each attempt, I was just discharged without any psychological follow up.

    I have had several appointments with mental health crisis teams over the years, each of them dismissing me with depression, changing and/or increasing my medication, and basically being told to “think positively” or “think of my children”. It didn’t occur to any of the health professionals who have seen me in the past to consider that there could be more to my mental health issues than “just depression”. (Please don’t think I’m minimising depression, I have it and anxiety as co-morbid diagnoses with my BPD. Depression is crippling, there is no “just” about it, except in this case, when the recommended treatments are different, and my emotional lability can produce very different symptoms.)

    I had been doing some research regarding alternative psychotherapies, when I came across Dialectical Behaviour Therapy (“DBT”). It sounded really interesting, and looked as if it would be extremely beneficial to me as it teaches you how to regulate your emotions.

    “Dialectical behaviour therapy (DBT) reduced suicide attempts in women by half compared with other types of psychotherapy, or talk therapy. DBT also reduced use of emergency room and inpatient services and retained more participants in therapy, compared to other approaches to treatment.” (NIMH, www.nimh.nih.gov/health/topics/borderline-personality-disorder/)

    In fact, the NICE guidelines for BPD include:

    “1.3.4.5 For women with borderline personality disorder for whom reducing recurrent self-harm is a priority, consider a comprehensive dialectical behaviour therapy programme.” (NICE, www.nice.org.uk/guidance/cg78/chapter/1-recommendations)

    I thought that my diagnosis would open this door up to me, which it might, if I complete a managing anxiety and anger management course (not through mental health services) first. I then have to complete a “managing your emotions” course before I’ll be considered for the treatment that NICE clearly suggest.

    While I understand that there is a lack of funding, and they’re hoping that the other therapies will provide me with enough coping strategies that I don’t require the DBT, there are very few other conditions that this same logic would be applied to. It’s like telling a type one diabetic that trying to control their blood sugar levels through diet alone is sufficient, unless they nearly die. In no case would that be suggested. They’d be put straight onto insulin (the recommended treatment) and be reviewed on a regular basis by their medical team. There wouldn’t be any arguing “well, there are other people with unmanaged diabetes who have your symptoms, but when they follow a good diet, they go away.” It would be accepted that type one is very different to type two, and although they can initially present similarly, type one is significantly more deadly if it is not dealt with correctly. BPD is significantly more deadly than anxiety, perhaps being told to go on a course for people with anxiety isn’t going to be the long-term fix that is so needed.

    “Community mental health services (community mental health teams, related community-based services, and tier 2/3 services in child and adolescent mental health services – CAMHS) should be responsible for the routine assessment, treatment and management of people with borderline personality disorder.” (NICE, www.nice.org.uk/guidance/CG78/chapter/Key-priorities-for-implementation)

    I got discharged from mental health services in the same sentence that contained my diagnosis. I have been told that if I am in a crisis, I will have to contact my GP, get an appointment, see them to get referred to the mental health team, and wait for an appointment to be sent through the post. During my last major crisis, I took 16 paracetamol in the time it took to have two swigs of cola. I wish I could say I was surprised to be discharged, I’m not. Mental health services in this country are in a dire state and I am by no means the only person in this situation. What isn’t considered by those in charge of the distribution of money is that someone with a diagnosed mental health condition who is not able to contact the crisis team directly when they are in crisis are going to be seeing (potentially) GPs, A&E staff, In-patient psychiatric staff, Police, Social Services, or maybe even a Mortician. I’m sure these services are far more costly (and overworked/understaffed) than what it would take to be kept on a database which allows you to directly ring someone who may actually be able to help.

    It’s taken me over a month to write this post, and I wouldn’t consider it to be my best piece of writing either. It’s a bit of a jumble of emotions, thoughts, and frustrations which I needed to get out. I congratulate you if you have read this far, and have only one request: please try to understand I don’t mean to be so emotional, and I am trying to get it fixed, it’s just going to take some time.


  • Princess and the Pea, as told by the pea – 10 minutes timed creation

    Hello, is anybody there? My name is Peabody Green, and I need help. I was kidnapped and held hostage last night. I managed to escape this morning, but I’m fearful for the rest of my family.

    The last thing I remember before it happened, is being in my pod with my brother and three sisters. It was cosy, dark, and cool. I was awoken by a sudden popping noise, and a pinprick of light which pierced the pod like a knife. The pod was torn in two, and a giant thumb swept through the pod remains, and detached us, one by one, making us tumble down into a bowl. I can’t tell you how many peas were in there, I was in a sea of green. I couldn’t see my family, and as hard as I tried, I couldn’t roll around to search.

    The giant thumb, accompanied by a finger, plucked me out of the bowl. I was enveloped in the grip of a giant, it was dark, hot, and moist. I knew we were travelling, but I couldn’t tell how far, or in which direction we had travelled. When we stopped moving, I was placed on top of a wooden board, and a large squishy object was placed on top of me. It was hard to breathe, and I couldn’t see a thing. The only thing I could do was listen.

    Time passed, and I began to think I’d been forgotten. I had no idea why I’d been taken, or for what purpose, and I started to plan my escape. I heard a door open, and footsteps getting louder as someone walked towards the place I was being held. I thought it was going to be the finger and thumb again, and braced myself for the inevitable hot, moist journey which was to follow. I was surprised when the squishy thing wasn’t lifted, and instead, a large figure lay on top of it.

    The squishy thing was pushed harder into me, the wooden board unyielding kept me in place. I heard a shrill voice yell something about a bed being uncomfortable, and the sound of multiple rushing footsteps followed.

    The weight of the squishy thing above me kept getting heavier, and heavier; yet the shrill voice continued still. This happened over a number of hours, as each one passed I prayed for it all to stop…

    The weight was finally lifted, and I rolled off the wooden board. I fell, forgotten onto the dusty floor and made my way to a corner, it is from this corner I am making my plea. Please, someone help me.

     


  • 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.


  • The Black Dog Cometh

    The black dog cometh, stalking me in the night

    Ears pricked, nose keen, following the trail,

    His paws pad the floor softly, keeping me in sight

    He follows close, never leaving, he will never fail

    To keep near me, he closes in, waiting to pounce,

    Crouched in shadows, bearing teeth, eyes flash,

    He strikes silently, he doesn’t announce

    His arrival, until he envelopes me, jaws gnash

    He has me in his grip, darkness washes over me

    I am engulfed, can’t fight it; no longer see light.

    Despair begins to drown me, like a riptide at sea…

    The black dog cometh, stalking me in the night.