Saturday, 12 August 2017

Obsessions, passions, special interests and hobbies.

I am experiencing a perfect combination of passions, which has led to a need to write about it, what leads to an obsession, how it feels, welcome and less welcome side effects. There is a strong chance that at some point I'll read this back and think "God, what a wanker!", but nevertheless, here goes....

There is often discussion about the language surrounding special interests, and comparisons to hobbies. Personally I think "hobbies" doesn't come close enough to even describe a fifth of the emotions involved in a good old obsession. I have had hobbies, pastimes that hold my interest and keep me occupied, that I look forward to. An obsession, an intense passion in something (and it can be anything) takes up so much of me that it needs to be categorised seperately.

I have different types of obsessions, they follow familiar patterns, but until I was diagnosed last year it wasn't possible for me to see them for what they are, I simply thought, along with many other quirks that make me Me, that this was yet another area that I wasn't trying hard enough to overcome, I was allowing myself to be caught up in it all and therefore failing again.

The main rule of obsessions for me is that they are like cats.
They come to you, they choose you.
Believe me, I have tried to muster up a passion for running or dieting, and it just ain't happening.
Instead my brain latches onto random, inexplicable things that hold it captive for a while.

Obsessions take different forms.
(I feel I should qualify here that I can't talk for all autistic individuals, these are my experiences which others may or may not share)

There are slow burning ones that stand the test of time, that may span many years, waxing and waning as and when I have time available to devote to them, always there to turn to, and always on my list of strategies to control anxiety. I am in control of these, and they leave a sense of quiet peace, that everything is ok in the world.

The next type I have are with objects. Time and time again I have been struck with the knowledge that buying a certain object, be it a pair of walking boots, a certain book, a gadget, even ice skates at one point, will change my life for the better, will make me a greater person and more interesting. Of course this doesn't happen, but during the time of researching and collecting screenshots and reviews of the item, I am unaware of this.

My least favourite ones, that can lead to distress and meltdowns, are The Causes. Every now and again, there will be a cause that catches my attention, it may be an ongoing news story, it may be political, it is usually messy, and I cannot see it until I'm over it, when I'm ashamed at assuming everyone has to know, in great depth, why my opinion is right. In the midst of these I feel a need to immerse myself and share as much as I can to prove the point. Afterwards I want to hide, and often lie low for a few weeks, and hope those I have annoyed have short memories.

My very favourite ones are the short-lived intense ones that last a week or so but leave lasting, fond memories that can be used to conjure up the extreme happiness that they bring. These are usually pieces of music that will be interlinked with a specific hope or dream, often classical, sometimes something unexpected. During these times my anxiety lessens, I have energy and I feel so positive for the future (things that are usually low in supply) and I want the feeling to last forever. There is a downside. Of course there's a downside. When going through these passions, my ability to start and complete tasks diminishes, I switch off from family duties and, for a couple of days, live in a world of my own. This annoys family members as I struggle to hear them and participate in family life, and leads to frustration as I (selfishly) would rather not partake in conversation with others. I've often wondered if these phases are driven by self preservation, as they always coincide with long drawn out periods of stress, where I feel utter despair and a sense of conviction that this time will surely be the time when I have a breakdown or die from stress related somethingness. Then along comes a jaunty tune or song to listen to on a loop that allows me to switch off and recover. I honestly think without these times life would be unbearable. Once it has passed the piece will remain a firm favourite, but will lack the intensity that it once had.

So on to today's perfect storm of passions, which has left me happier and more content than I've been in months. I would have liked to have added photos, but the family laptop is once again broken, and blogspot has some limitations when used on an iPad. When all is restored to working order I will come back and add some pictures.

Luckily there is no Cause at the moment, so I am free to be calm and content.
I have recently bought a pair of walking boots that I have coveted for a while (actually that's a bit of a lie, I have coveted generic walking boots for a while, but soon realised these were often dull, until I found my beautiful red boots which arrived last week).
The clouds tonight have been beautiful, a peaceful presence during a solitary dog walk.
And I have a new song obsession. I'll go into a little more detail here, because without background I will look like a middle aged saddo. Actually, even with an explanation I will, but I'm going to give it anyway!
We bought Moana this week. I'm not a huge Disney fan, but for some reason this has grabbed me, perhaps because its purchase coincided with a lull in tricky behaviour from the boys, perhaps because the story of a young woman learning her meaning of life has vague parallels with a not so young woman finally having the opportunity to find herself (unfortunately not in such beautiful surroundings).
One of the songs, You're Welcome, is the song I have been listening to on repeat. I liked it, but it wasn't until seeing a video of it being performed live that it really settled in. Seeing the passion and enjoyment from the conductor was wonderful, and gives me hope that at some point in my life, I will be able to find work in something that gives me that joy.

So there, that's why right now I am happier than I've been in ages.
Over the course of the last few years the occasional person has suggested that we curtail PDA boy's passions somewhat. Having a better understanding of my own, I can now say with some force that I will never limit his interests. A life spent following your passions must be the best life there is.

Sunday, 16 July 2017

Harrogate Branch NAS Conference 2017

It's been a while since I've written anything, having two boys at home is a little time consuming and overwhelming, which has meant a bit of a knock to my mental health and a need for various strategies to manage things (including a solo weekend away - ice cream, crisps and prosecco in bed for tea - highly recommend it!). This has also led to me deactivating Facebook for the time being and abandoning other projects to make head space for family life.

A couple of days ago I attended the Harrogate branch NAS conference, which also marked the tenth anniversary of the branch.

The event took place in a local school which easily accommodated various stall holders, speakers and attendees, and was very well organised.

Proceedings started with a brief talk from Mark Lever, CEO of the NAS, who explained some of the campaigns that are currently running, and some of the ins and outs of the finances of the charity. It was good to see him attend a local event. During the morning break he left his belongings on my briefly unattended seat, which set off a near panic attack, tears and very nearly an early exit for me, so he has a slight black mark against him for that 😂, apart from that he seemed alright.

Following his talk, we then heard from the Autism Strategy Manager for Tees Esk and Wear Valley NHS trust. Later in the day we also heard from local representatives from chilren's and adult's autism services. I'm going to talk briefly about both of these together.
I am perhaps not the best person to speak about these, as I can be very opinionated about the role of certain professionals within the public sector, most probably because we didn't have very positive experiences to go by (although my own diagnosis through adult services out of area was very efficient and positive). I found these particular talks quite frustrating, as the emphasis was very much on how good the services are, and the content self-congratulating, which I find galling when so many people's experiences through using these services can be distressing. I get the impression though that they think the services they offer are very good and have a big impact locally, but this certainly goes against anecdotal reports from many service users.
I would prefer an approach that goes something like "We have received xyz feedback, and we realise that improvement is needed, so this is what we plan to do, please continue letting us know what needs to happen, and what we're getting right". I would also be interested in hearing more about their training course content, as going by experience, even though training courses can be freely available, the content and delivery is often poor and does not take into account the needs of the autistic people themselves. I'm happy to be corrected here though, as my experience here may be a year or so in the past and things may have improved.
At one point a rather distressed mother interrupted a presentation to ask for help for her daughter, who was refused support through these services as she "looked fine". In this day and age we should no longer be hearing any stories of this kind, yet so many of us have faced this dismissive and damaging attitude.

On to the highlights of the day now, which may not necessarily be in order of appearance.

Lunch. More specifically, flapjacks. Ashville College's catering department outdid themselves when it came to the flapjacks. The rest of the buffet lunch was excellent, with the added bonus of pudding being available at the same time as the sandwiches (I am easily pleased!).

A talk by Rob Knox, from Rob Knox Associates, with many years of experience through education, spoke about various aspects of autism, he had some interesting views which were good to hear.

A local autistic committee member spoke about their experience of bullying in school, this was obviously an emotional subject to talk about, and so much of what they said resonated, both the bullying itself and the attitudes from those who should be dealing with it. Unfortunately, it highlighted the fact that in the last few decades, things really haven't changed in this respect. I think bullying is something I will tackle in a blog post at some point, but I suspect it will be a difficult one to write.

Specialist speech and language therapist Gina Davies delivered an outstanding speech about her work with autistic children and young people. It's so good to hear from people who have such a good understanding of autism. I highly recommend a Google to see the work she is doing, and if you do get the chance to hear her speak you won't be disappointed.
She did mention how polite parents tended to be, in the face of professionals offering tried-and-failed methods, which was a bit of a lightbulb moment for me in realising that my bluntness and refusal to try strategies that had already proved useless probably annoyed the professionals who felt that they had all the answers. Maybe one day I will develop some diplomacy when faced with pros who think that a twenty minute observation session means they know exactly how to handle my child....

The day finished with a talk by Dean Beadle. He warned us that he would be positive, and he really was. He was a joy to listen to, and firmly knocked on the head the myth that autistic people don't have a sense of humour. We really need more autistic voices, to drown out the relentlessly negative and patronising NT Expert voices, who so often miss the point of what it is to be autistic.
I urge any of you to grab any opportunity to hear Dean Beadle speak, he was a breath of fresh air, and showed a much more realistic and living view of autism than the behavioural aspects and resulting management that are usually highlighted.

I thoroughly enjoyed the whole day and can't wait for the 11th annual conference. Hope one day I can speak at one (tiny hint if anyone from Harrogate NAS reads this - specialist subjects include masking children in school - the whys, and how to support them, plus the positives of adult diagnosis. Specialist subjects also include clouds and chickens, but these might not appeal!).

Friday, 19 May 2017

Autistic Siblings. Help!

If you have an autistic child, current estimations say that you have a one in five chance of having another. To many of us with autistic children, this comes as no surprise, most parents of autistic children I know have second and even third children who are also autistic, others have children who are decidedly quirky, although they may not meet the criteria for a diagnosis.

This often means that plenty of advice, aimed at parenting one autistic child, can be more difficult to implement.

Now we don't have school to manage, our biggest challenge is having two PDA boys together. Individually they are more receptive to the various PDA and ASD strategies that we use, when together it is far more difficult to manage their anxiety and to reach a point where strategies can take any effect.

Neither boy tolerates the other well. I believe this is due to a few things. Sensory overwhelm, as both boys are both hyper and hypo sensitive to noise - other people's noise drives them up the wall, but to manage this, they make lots of noise. Various bird calls, whistles, grunts, screeches, simultaneously pissing each other off whilst trying desperately to make the other stop. Anticipation, as both boys wait for the threats and insults to begin, and vie to get in there first. Anxiety and anger as neither likes being treated in this way, understandably.

I've been reading Ross Greene's Lost in School (which is brilliant by the way, I will be reviewing it in the near future), and trying to work on my Plan B skills with both boys, trying to encourage mutual respect and fewer fight club moments. So far I'm having no success, and I suspect I'm not alone.

I have often asked online for advice as to how to get to a point where I can manage both boys at the same time, replies are usually from parents in the same boat, I have yet to find any advice that actually works (although it's early days with Lost in School, which I will persevere with), apart from keeping them separate, which is easier said than done when I'm alone with both whilst my husband works, and both, despite having their own rooms and space, seem to want to be together all the time.

Even the Cygnet Siblings course that I attended a few weeks ago, which I had great hopes for, barely acknowledged that autistic children very often have autistic siblings, and instead focused solely on the effects of autism on neurotypical siblings, and sadly when parents were talking about the issues with their other children, advice tended to follow the line that these children were copying the behaviour of the autistic child. Whilst this is possible, the genetic risk factor shouldn't be ignored, and I strongly feel that there must be some collection of advice available for those of us who have largely neurodiverse families.

In an ideal world, what I would like is to produce a list of sibling strategies, both proactive, long term strategies, and some heat of the moment "Aaaargh, what the hell do I do now" strategies.

Thinking on my feet, being inventive and humorous are not things I'm good at, I'm a planner, I like to have methods at hand to adapt to our needs, and this is where you can help.

If you wouldn't mind, and particularly if autistic sibling difficulties affect your family too, it would be great if you could share this post and gather any helpful ideas, book recommendations etc and post them on my FB page (The PDA Soapbox). I really need some fresh ideas, and I'm pretty sure there are others who need the same.

In return, I will collate this information in one handy post, referencing these tips, linking to books and resources. In helping me out here, hopefully I can help you too!

Thank you!

Friday, 5 May 2017

Scooter school; dossing about or progressing?

It's been just over three months since PDA boy was officially deregistered from school.
In that time we've seen a big change from a tense, angry boy to one who is slowly relaxing, is now happy and willing to visit his grandparents to go for walks, to cook fish, to hunt for frogspawn in their pond, this is a far cry from the awkward boy who I had to bribe to visit them occasionally! He is also happy to drink out of mugs that aren't officially his, something which would have triggered a meltdown not that very long ago. 

So how about education? How are we getting on there?

At first glance it would appear that we are doing not very much. He is still very much settling into this new routine, he is still angry on Sunday nights in preparation for school the next day, then remembers there's no school and ends up having a mini-meltdown with the relief. 

PDA boy is very keen on scootering at the moment. YouTube videos of choice are mainly of people carrying out various impressive scooter tricks, tutorials so he can learn to do tail whips, bar spins and other tricks with odd names. Over the last few weeks, practicing these tricks has had hidden benefits for PDA boy, ones which I feel are going to play a big part in getting him ready to tackle some more academic topics one day.

We are lucky enough to have discovered a brilliant skatepark locally, a concrete haven of ramps, lumps and bumps.

Our first trip a few weeks ago was uneventful. A terrified look and "I can't" summed up the time we were there. He attempted a couple of the lower ramps, then we went home.

Within the first four weeks, he practiced these lower ramps and even started some simple jumps. It was becoming clear that for every small step of progression there needed to be some intense coaching, done in a way that avoided demands. Each small manoeuvre needed to be broken down into smaller and smaller steps, encouraging and carefully hiding praise into acceptable phrases that a praise-avoider can cope with. 

Going to the skatepark most days looks like we're both avoiding work. It's easy to load up the scooter and drive to the park, and we like an easy life, but we're seeing first hand that allowing PDA boy free access to something he enjoys is having some unexpected benefits.

After deregistering a child from school, it's very important to allow them settle into a routine, to "recover" from their years at school. PDA boy's time at school, both primary and his short secondary career, were not positive experiences for him. I can't say that school broke him, we didn't allow it to get that far, but it certainly damaged him. We are very aware that right now PDA boy needs space, a chance to relax, time to learn for himself who he is. 

Regular scootering is giving him the space, the chance and the time. 

He is pushing himself to improve and this can be tricky, sometimes these internal demands cut short our sessions as he can't bear the pressure he has put on himself, but gradually we are seeing increased willingness to follow instructions, to allow himself to be coached briefly, and we are seeing slow but steady progress. 

Anxiety can be limiting, but spending this time with him allows me to more accurately spot  the signs and consequences of this anxiety, which in turn means PDA boy can learn himself how to overcome it if he chooses to. 

Scootering and scooter ownership has led PDA boy to learn scooter maintenance. He is never parted from his trusty allen key, constantly adjusting handlebars, clamps and wheels. Keeping his scooter dialled (whatever that means!). 

Scootering has brought added unexpected benefits. Occasionally my older son joins us. 

Usually PDA boy and Brian together is a disaster, neither can tolerate the other, homelife is usually incredibly difficult, trying to meet the needs of two very similar boys who appear to set out to make life miserable for the other, and resulting in a never ending loop of doom. 
At the skate park though, we have a temporary but blissful ceasefire. Both boys will take turns on the scooter, both will coach each other without the usual insults and jibes. These are the moments that remind me that it is all worthwhile, that there are rewarding times. 

Whilst this pastime may not immediately strike anyone as academic, it is enabling PDA boy to get into the good habits of persevering and accepting instructions, and it's enabling me to work out how best to reach him when he is ready to branch out and tackle some more traditionally educational topics. 

Scooter school may sound like a cop out, but so far it's working wonders for this family. 

Thursday, 13 April 2017

Autistic/neurotypical language barrier.

It's becoming more and more clear to me that some of the main problems us autistics face is that there is a language barrier.
This harks to my previous post about unspoken rules, and is evidence (to me) of lack of understanding on both sides, it is not (as we are told so often) that those on the autistic spectrum are impaired or defective, it's not that we can't communicate, in my experience, and I wonder if it's more a problem from the (yet again) rigid expectations from some non-autistic people who cannot see that their way, their body language, their communication methods, are not and should not be the only and right way, which then clash with the differences some autistic people have when it comes to communicating resulting in mixed messages, frustration and confusion all round.

Don't get me wrong, this is not a post designed to bash non-autistic people, but when the majority of autism literature eagerly points out our failings, our impairments, our less than ideal behaviour and how to cope with it, it's only fair to point out that it goes both ways, and many of our difficulties are directly caused by neurotypical people misunderstanding us, or making ill thought out assumptions.

I've already talked about my difficulties with CAMHS, and my light bulb moment of understanding my own processing differences, and I think this is a perfect example of the misunderstandings we face all the time.

CAMHS is an organisation full of people who should be no strangers to autism and its various presentations, yet they are well known for failing many of our autistic children. They of all places, as the main option for dealing with the mental health problems our children so often struggle with, should be aiming to have a high understanding of autistic behaviour, and I'm not just talking about the stereotypical stuff, I'm talking about the differences autistic people experience when it comes to emotions, facial expressions and body language, these are all things that are commonly misinterpreted as us telling stories, exaggerating and straight out lying.
I have been in appointments with a therapist and have calmly, matter of factly even, told them about violent episodes and suicidal behaviour. In these instances I wonder if they were looking for vulnerability on my part, desperation, fear? These are all things I feel, but by the time we have spoken to anyone, out of necessity I have formulated a script in order to get out the information, without it being muddled or muddied by me searching for the right words or phrase to best describe the things we're worried about, wanting to get out as much information as I can to help them to understand us better, and if I let go enough to cry, I wouldn't be able to say a word, useful or otherwise, but in doing this, I haven't followed the acceptable NT rule book, I have come across as cold, perhaps clinical, or too calm, and the manner of getting my words across has left people, not just CAMHS, but most professionals we have worked with, believing there's something off about us and our situation.
It's frighteningly common for these misunderstandings to occur when an autistic child also has an autistic parent, and it leads to incredibly difficult situations where mothers are accused of fabricated or induced illness unfairly. We were lucky in that respect, but we are the owners of a long letter proclaiming us obstructive because of various reasons, but when you delve into those reasons with an autistic filter, it's very easy to see how this happened, and it's all down to me not quite getting the rules that NTs can easily follow. It isn't fair that we may disclose our own autism for reasons of clarity, and it is then misunderstood and used against us, particularly in situations when those we are with should have a better understanding of autism than your average person.

Talking to other autistic people, including my sons, it appears to be familiar territory when we talk about not being believed, when ill, when feeling overwhelmed, scared, hurt. PDA boy opened up to his CAMHS therapist (no mean feat considering how difficult he finds this), but as he did so with a cheerful look on his face, he wasn't believed.

When it comes to autism, facial expressions don't necessarily match the emotion we're feeling. This can be confusing, but it's not an insurmountable problem, it's easy enough for someone to take in the simple fact that What You See Isn't Always What You Get™. Just as it's easy to take on board how common it is for autistics to script out things they need to say, so it may not be delivered in a typical way. It's also easy to learn that body language may be off kilter, so whilst lack of eye contact and eyes darting around may be a sign of guilt or a shifty character in non-autistics, in autistic people this can simply mean anxiety or feeling uncomfortable. It's also important to realise that to us, a lot of NT behaviour, small talk for example, and a tendency towards ambiguity and asking open ended questions, can be really stress inducing and confusing, reducing our capacity to "act normal" in circumstances where we are then judged if we are unable to come across well.

This is a huge problem for our children in school where behaviour, even when the child is diagnosed, is judged as naughty, manipulative, deliberately obtuse, and all sorts of other delightful labels that prove that knowledge about autism is a hell of a long way off from being at an acceptable level, with all too common phrases such as "we're all a little bit autistic!" and "they have to live in the real world, they need to make an effort" completely undermining what autism means to us and our children. These attitudes succinctly point out that the world is not quite ready or able to accommodate us, and the onus is on us and our children to change into socially acceptable variations of ourselves, which then creates more confusion because then..."you don't look autistic!".

It would surely be so much easier, would it not, for anyone working with us or our children to have a basic knowledge of autism, our emotions and body communications, to save all the unfortunate and downright harmful judgements that cause damage all round.
To be absolutely honest, it would probably be possible to impart this information in just a few lines, all it takes is for people to read it without an agenda of distrust.

1. Autistic people may not display typical body language, don't make assumptions based on non-autistic standards.

2. Autistic people's facial expressions may not match their emotions, this does not mean they don't care or they're not feeling what they say they are, and it may be a coping mechanism to get through a difficult appointment.

3. Be aware that many autistic people, again as a coping mechanism, need to script what they say in order to speak fluently. Do not assume that scripting means it is exaggerated or fabricated, and again, remember those facial expressions may not match your expectations when talking about very difficult subjects.

There, I managed to say in three points the main things that would have helped us through the various appointments we had over the course of several years, and would have helped teachers to understand PDA boy a little better and led to him being supported. In terms of understanding enough to make all those appointments productive, these points could have made a huge difference to everyone involved.

An academic knowledge of autism does not make someone an expert. Combining their expertise with listening to those who live it, or live with it, on an individual basis and taking it at honest, face value, not making pointless comparisons to how non-autistic people are, is a valuable tool for anyone working with autistic people, no matter what their role, and could have the potential to improve the lives of autistic people and their families immeasurably.

Monday, 10 April 2017

The real world and unspoken rules.

"Well, they've got to live in the real world"

Words most of us have heard at some point, usually when supports are being denied, because somehow, magically, a lack of support will make our children buck up and jolly well pull themselves together.

The real world is a place where bog standard autistic people aren't appreciated. I don't mean the ones like Bill Gates, Einstein, Dan Ayckroyd, all autistics (or suspected autistics) who have, against the odds, become decent, hardworking humans (tongue firmly in cheek here, because it's not against the odds at all, these are people who've been able to carve their own niche and use their skills in a way that is denied to so many), I'm talking about the ones who are unable to find suitable employment, the ones who are more likely to attempt suicide. This is the real world and it's not one we should be proud of.

The other day I was talking to my daughter about school. Whilst we've had concerns about her anxiety, her black and white thinking which can lead her into trouble, she is not autistic, she navigates the social side of things with ease, and has taught me a lot about people through honest discussions.

She may have stated the obvious, but when she explained to me about how to get on in school, it was a real lightbulb moment as to why my two sons didn't cope, why I hated school, why so many autistic children are bullied.

There are unspoken rules at play. These are the ones which enable a child to know which teachers respond to light hearted cheekiness, which don't, which you can have banter with, get away with breaking minor school rules with if you play the game right, and which teachers you need to be on best behaviour with at all times. These same rules apply to banter with fellow pupils, recognising intent with ease, knowing if someone is being genuine or not, knowing if someone is up for a laugh or needing to be quiet.

This is a big reason why autistic people struggle. How on earth can you tell which teacher respects a more outgoing, open approach, and even if you can identify that teacher, how do you perform in a way that is at odds with your personality?

These are the things that come to some children naturally, and some less so. These are things that can mark children out as disruptive, naughty, rude, the class clown, things that can leave our children desperately confused and frustrated, because try as they might, it is incredibly difficult to fit in when these skills do not come naturally. How do you know that someone's vicious words are intended as harmless teasing? You don't. And if you attempt the same back, chances are it will be misjudged and backfire, or will be done to the wrong person, the right words to the wrong teacher.

When our children grow up they will face interviews in order to find a job. Only recently I was talking to someone who had hired someone for a job, and in the process turned down other applicants. Amongst them was someone who was more than qualified for the job, had experience, good references, but they didn't make it past the interview stage because they were shifty, they wouldn't give eye contact and obviously had something to hide. At no point did the interviewer consider that there may be a reason for this, and this seems to be typical for "the real world". Difference is not tolerated. Difference is a green light to bully, to humiliate, to judge and to dismiss in favour of people who may not be as qualified, or talented, but have a collection of social skills which people in the real world are impressed with.

Decent schools and workplaces tend to be the exception rather than the rule. It is often up to autistic people to be able to beat the odds and succeed, but when they do, this is held up against other autistics who for whatever reason haven't been able to succeed, they're seen as not trying, or choosing to behave in a way that isolates them.

The unspoken rules also cover ambiguous language. My daughter may well be able to read through vague words which on the face of it may sound like "no, you don't have to do that", and instead can interpret the silent "you don't have to, but to prove to me how dedicated you are, you will" which means a step forward to impressing and succeeding, where my oldest would not understand this at all, something that has backfired on him and led to unfair accusations of laziness and lack of stamina, and possible breakdown of a pocket money job he has held for almost two years. The real world doesn't seem terribly interested in giving opportunities to those of us who struggle with the unspoken rules.

The real world values flattery, a method of reading what someone wants to hear, being able to pick up on someone's insecurities and vanities in order to get what you want out of people. Flattery gets you everywhere apparently. As an aside, I loathe flattery, and I lose respect for people who respond to flattery, I don't believe they see the real person, they see the ability of the person to glide gracefully through a conversation, manipulating as they go along, and getting away with it because no-one wants to admit they were daft enough to fall for it!

Jobs tend to go to the people who get the rules, who can turn on the charm, who can easily converse, give eye contact and follow all those social cues that are regarded as so important, even though these things give few clues as to how skilled and loyal a worker they will be, or how much of an asset to a company they will be. Autistic people may flounder under the pressure of an interview, unexpected questions designed to throw the candidate to see what imaginative answer they can come up with, it's not an environment where we can shine.

Life isn't easy, growing up, moving through the process of education to the world of employment, with a constant barrage of expectations which can be difficult for us to meet. To non-autistic people it may be very simple to do what you need to do, and assume that it's the same for everyone else, when it isn't.

To an autistic person, school, work, socialising can all be difficult and fraught with stressors that you cannot fully prepare yourself for, even without this silent language that we're meant to understand on top of everything else.

If you still can't understand why only 16% of autistic adults are in full time employment, and you still can't see why suicide feels like a valid option, then you need to make sure that you learn and listen. But don't do it in a way that so many empathyless people do; listen then decide we're lying, being dramatic, or scroungers, or that we're weirdo freaks that don't deserve to be listened to anyway. Listen to us without an agenda.

I've now seen first hand how catastrophic a work break up can be, and it was all entirely preventable. Autism led to needless misunderstandings, and have resulted in a boy knowing beyond shadow of a doubt that he is useless. Any resilience he had has been wiped out with a few cruel words, and all because too many people feel the need to speak in riddles instead of being clear. And they say we're the ones with impairments.

Sunday, 9 April 2017

It's been over twenty five years since I wrote a book review....

....and that was in school (a horrible place), and I was unwilling to do so. Yet here I am, a grown up (sort of) and willingly writing a review of a book I bought yesterday morning.

I'd heard a lot about the book, on Twitter and Facebook, but as I'm not a great lover of fiction I'd decided to wait and not rush to buy it immediately, I'd see what others thought.

So anyway, yesterday I needed to go into town with my daughter, after a stressful traipse around Primark, we headed to Waterstones, where I decided that should the book be there, it was obviously divine intervention, was a sign, and I must buy it. The book was there, so I bought it.

In the past, i have bought some fictional books with autistic characters, but they've always felt fake, contrived, lacking in depth, following stereotypical features enough for the book to be rendered a niched cliche, not something you would happen across in the teenage section of a mainstream book shop at all, but something you would seek out on Amazon because it would be useful, rather than having expectations of actually enjoying the thing and not being able to put it down.

The State of Grace by Rachael Lucas has rendered me useless for much of this weekend, I have ignored my husband, my children, the dogs and the pigs, washing has piled up (thank god it's now school holidays and no-one needs clean uniform!) and the lounge carpet is barely visible through a layer of dog hair.

The protagonist is an autistic teenage girl, but the author has managed to produce (I assume drawing on her own experiences) a likeable, interesting character, well rounded and believable, muddling through life and accurately describing so many experiences I can relate to.

I've never read a book where the main character is someone like me. I've read books where the someone like me is the weird one, the one that others laugh at, the dispensable one, and can't tell you how refreshing it is for the tables to be turned in this way. Grace is cool in her own way, and, I believe, sheds light on how autism can be, the awkwardness, the fear, the meltdowns, but equally the fun, the love and the insight, it's a far cry from Rain Man, which I wholeheartedly thank Ms Lucas for, is that a light at the end of the "crap stuff people believe about autism" tunnel? I do hope so! Books like this may prove to be game-changers for families who are plagued by the good intentions of people who cannot see the autism in them or their children, books like this show autism in a normal every day way, the ups and the downs, the roller coaster that is real life.

I don't want to go into the book too much, because knowing me I'll end up stuck on the details and will fill you in on more than you'd appreciate. I can tell you it is definitely worth reading though. I will be passing this book on to my daughter, who had claimed it first, but made the mistake of going out with friends which gave me the chance to smuggle it out of her room (another downside of socialising...). She is looking forward to reading this, not because it's about autism and she may learn something (although this is an added benefit), but because it's a great book, which must be the best reason in the world to read a book.