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.

Saturday, 8 April 2017

Back with a bump.

A week ago I was still flying high from my trip to Wrexham and meeting other autistic people.

As I always do when I'm in certain moods, I find it very difficult to imagine that I will ever feel different than I do in that moment. A bit like dieting, being in the zone and believing you are impervious to the siren call of chocolate and cake, yet all of a sudden, oops, you're eating chocolate with no idea how you got to that point.

Last week's euphoria is a hazy but pleasant memory. This week I am back to reality; home life, family shit going on to stress and worry about, usual constant questioning myself over everything I've said or written, or might say or write at some point, avoiding social media but not quite well enough to protect myself from my own stupidity at times like this, sky high anxiety (which is pretty bloody annoying now!) and generally feeling very isolated and low.

This is part of the reality of autism. It's not glamorous, it's not nice, but this is the stuff that needs to be dealt with on a daily basis. Having spoken to PDA boy quite openly about this, he confirms that he feels the same, but better since being out of school, although there is still a roller coaster of emotions going on.

Some strategies are useful, for PDA boy things like chopping wood and scootering can level out his mood somewhat, for me, silence really is golden, especially in an empty, tidy house and my iPad fully charged (or at least above 80% charged so I don't get twitchy about it running out of battery).

I need to remind myself of some things at times like this:

Don't talk unless you've fully thought it through.
Don't write anything unless you've fully thought it through.
In fact, scratch both of those, at times like this it's safer to say nothing and write nothing.
Just drag yourself through it, day by day.
Know that things will improve, they always do.

I have more challenges coming up in the next month which are keeping me awake at night and keeping my anxiety levels topped up, so I will be laying low for a while and trying to keep on top of the essential day to day stuff.

Autism has its down sides, but hopefully as we learn to find ways to help ourselves, these times will be fewer, or at least more manageable, and will be balanced out with easier and more contented times.

Wednesday, 5 April 2017

Top five PDA strategy countdown.

These are the top strategies that see us through daily life. 2-5 are interchangeable, depending on how the child is reacting to them, how subtly they can be slipped into life and how fresh you can keep them. Our PDA children need variety, so if a strategy works, keep swapping about with other strategies so they don't become predictable, boring and anxiety provoking.

Prescriptive ABC type of parenting strategies rarely work for PDA children. I can't tell you to follow what we do exactly, because it may not work. The trick is to use some general strategies and tweak them to your individual child, after all, you know them best, you know how much they can take without pushing back.

5. The Incredible 5 point scale.

I intend to write a more in depth blog about this, or even make a video.
The 5 point scale is an opportunity for child and parents/carers to learn to recognise the little signs that not all is well.
Until using this method, PDA boy appeared to be having giant meltdowns completely out of the blue which took us by surprise every time and really fit into the Jekyll and Hyde image that's so often associated with PDA.
Taking a big step back, watching, and making notes, allowed us to start seeing the little things, the tiny features of our son which allowed us to accurately identify how he was feeling even when he didn't have a clue himself, this then gave us a head start to introducing techniques to help him feel better and hopefully avoid meltdown.

Like any other PDA or ASD strategy, it's not infallible, it's not perfect, but it does help alongside other methods.

The 5 point scale is a way of rating how a child is feeling, 1 = fine, happy, relaxed, 2 = ok, but a little bit stressed, but nothing to,worry about at this stage, but keep closely monitoring because.... 3 = stressed, but still receptive to calming strategies and distraction to prevent reaching number..... 4 = too late, meltdown inevitable, get child to a safe place or batten down the hatches, 5 = meltdown, wait it out, there's nothing you can do here, child (or adult) is in fight, flight or freeze mode, nothing you say will help, some children may respond to hugging, some, like mine, will resort to violence if not left well alone at this stage.

I can't tell you which behaviours to look out for in your child, I don't know them, but the more you use scaling, the more in tune you will be to your own child's body language.

Printable scales can be found on the website The incredible 5 point scale, alternatively you can make them with the child making it more personalised, eg. PDA boy made his with animals, 1 was represented by a meerkat, 5 a mosquito.
You can also use more numbers, say 1-10, if 5 isn't nuanced enough.

There are other ways in which scaling can be used, for example to scale behaviour from acceptable to unacceptable, but in my opinion when it comes to PDA, it's maybe better to focus first on using it to learn how the child is feeling, we've found that using it in too many areas just dilutes its effect and makes PDA boy wary of it being used.

4. The Explosive Child by Ross Greene

An excellent book, which teaches collaboration and negotiation skills to parents/adults working with the child and the child themselves.
There is a sister website to this book called Lives in the balance, and a Facebook page (also called Lives in the balance) which shares short videos occasionally to show a practical demonstration of how these methods work.

3. Pick your battles, pick your rules.

When it comes to PDA strict boundaries and zero tolerance tend to increase the difficult behaviour, because the child has very little control their anxiety will be sky high which means that their need for control skyrockets, by avoiding demands and more fight/flight/freeze behaviour, which is very distressing and uncomfortable for the child.
Don't say no if there's any chance you'll change your mind at some point, after hours of meltdowns and badgering. If you can say yes, say yes and go with the flow. It's not always easy to say yes, and sometimes we have success with a "we can't do this right now because xyz, but after we're done we can do it, shall we write it down?".

We found as well that we need as few absolute rules as possible, obviously these will depend on the age of the child, a four year old will not need a curfew for example.
Our main rules are:
Teeth must be brushed.
Seat belts must be worn.

Other rules may be added as necessary, but there must be an obvious point to the rule, if the child can't see a reason for the rule, they are likely to not respect it, and you might as well save yourself a whole lot of heartache and meltdowns and relax the rule, save it for a time when the child is more relaxed, or there is a natural consequence to your rule.

We have not introduced a no hitting rule in our family, not for PDA boy anyway, because to do so would show him that we think this behaviour is under his control, which it isn't (yet!). PDA boy is only violent when in meltdown, something which has massively decreased since taking him out of school. He knows violence is not acceptable, and understands that we work with him to help prevent this. Once it's happening it's too late, we can only keep our other children out of the way and keep ourselves safe, no point punishing him for something he will feel dreadful about once he's calmed down, better to support him to not get to this point in the first place, and teach him the skills to regulate himself.

Rules are for things that he has control of. He does push it, he will unclip his seat belt close to home, and in these instances we will stop and lock the car, and in a very calm voice say something like "oh dear, I can't drive when people aren't strapped in", and wait. It's more difficult when he melts about this, but tackled another time by writing a list about what we're doing, that he has input in, and as he understands the seatbelt rule he will add this to a list, almost like a social story, it helps him to carry out the demand.

Toothbrushing took a long time, but we got there by making sure he had two or three toothbrushes, a choice of toothpastes, choice of toothbrushing song (yes, we sing songs to get our children to brush their teeth!), which all together eventually helped him to feel in control of the whole process.

When it comes to non-negotiable rules we've found it's important to be ultra consistent, never back down, and keep going, even if it takes months. Some things have to be done.

By taking away pointless rules it allows that child more scope to accept only a handful of rules.

"The less a child has to do, the more they are able to do" is a mantra that saw us through some very difficult times.

2. Decrease demands.

Change your language. Life is full of demands, even hidden ones, and a child will respond much better to options, "let's see if...", "I wonder how I can....", instead of "right, bedtime, NOW!" or "sit down and eat your tea".

It means you need to be imaginative in your approach, and like anything, this is a skill you can learn. Keep notes of your successes, and try to find other similar ways to handle things. Find out what works (for us laminated lists were a godsend), but shuffle things round so that the child doesn't get bored with the predictability, or you, the parent/carer don't get complacent. Talk to other parents, there are support groups out there, share strategy ideas, try new things, be humerous, adventurous even.

1. Accept PDA and be realistic.

None of the above strategies are any good long term without an underpinning of acceptance.
Your child is not naughty, or deliberately wilful. They have an autism spectrum disorder which means that even basic demands can send them into fight/flight/freeze mode. The child is likely feeling dreadful. Meltdowns are avoidable to a certain extent, using the above strategies, but when they do happen they are out of the child's control, just like an asthma attack or a seizure are not deliberate.

Understanding this, and making sure all adults involved with the care of the child go down a route of understanding and supporting instead of judging and trying to discipline it out of the child, can go a long way to a more peaceful life.

It's so common to read and hear of different parenting styles, when parents' views clash, and it's so important to remember in these cases that it's not a competition, it's not one parent pitting to win over another parent, it's about a child, a child who will be far more confused and anxious when parental approaches are conflicting.

PDA parenting can look like extreme pandering to some parents, and to strangers and sadly to many experts. When you understand the underlying anxiety though, you can get a decent understanding that the only way to progress is to take the anxiety away and take tiny steps to tackle each little trigger, or avoid it altogether. This is not weak parenting, working with your child is something amazing parents do, so don't ever let anyone doubt what you are doing for your child. The child is autistic, no amount of "well they've got to live in the real world" is going to make them stop and think "oh, I'll stop being autistic!". Accept and respect the child you've got, use methods that work, and bugger anyone else!

If one parent is resistant to trying these methods, it might be worth suggesting a trial period, say a couple of months, to use PDA strategies alone, forget discipline, forget rules for rules' sake, go with the flow, allow the child control of themselves, and see how it goes.

Be realistic though, there is no such thing as a magic wand, the child is autistic, this is not going to go away. Life is hard for the child which makes things hard for parents/carers and siblings, this is not going to go away. The point of the strategies is to make life easier and allow the child a chance to reach their potential, not to cure the child!

Keep diaries, this is simple with the 5 point scale, as you can simply record the number that corresponds to the child's feelings, you will then have a record of how things are going.

Since taking PDA boy out of school, he has gone from mainly 3s and 4s, going into 5s on a regular basis, to mainly 2s and even occasionally 1s! It's still difficult, but the improvement of mood is proof enough to us that we are doing the right thing for him.

If the child is able to articulate how they are feeling talk to them about things, ask what works for them, what doesn't work, you might be surprised at the insight they can show surrounding their demand avoidance. If they are able to tell you, you need to act on it and show them you are listening to them. Ignoring them and their views will show them they can't trust you and may negate any progress you have made.

Remember that school can be a difficult place for our children, and stress levels may consistently reflect that. If you can get school on board with at least some of these strategies it can be very beneficial to the child.
Home educating isn't as scary as we thought it would be, and seems to be something that many PDA parents choose for their child at some point, simply because the stress involved with traditional schooling can be so damaging for our children. This is a very personal choice though, and depends on many other factors in life.

Remember as well that we are all human, none of us is perfect, we all have bad days when things escalate, days when it's too easy to slip into an authoritarian parent role which inevitably leads to meltdown. Don't beat yourself up when you get it wrong, try to have a break and then start again. It's hard work, we all cock up sometimes. Remember that it's not the child's fault though, and that will make it easier to get back on track!

Monday, 3 April 2017

Services: do they know what we think of them when things go wrong?

It's late morning, I'm sitting down with my first cup of tea of the day (which is way overdue as I'm struggling to readjust from travelling free woman to being mother, home educater of two and general washer upper and doer of all) and browsing through social media whilst the boys are busying themselves with an old engine in the garden. I need a rant to help shift this horrible feeling, so here goes!

Looking on Facebook it has struck me how often I read of parents dreading involvement with their child(ren), referrals and appointments with CAMHS, with disability teams, within schools. Whilst so many of us are desperate for support, at the same time the fear of the unknown holds many of us back.

There are cases where services get it right, where children are supported well, where families feel confident that they are understood.

Sadly though, there are more stories where parents feel threatened, misunderstood and scared.

I often wonder what would happen if there was an opportunity to have a frank discussion with the same people we are scared of.

For us, this is not going to happen, we are grateful to be away from CAMHS, and I have no intention of prodding them just to find out their take on things, but at some point, for families everywhere, I think this could be a useful exercise.

Apart from asking why masking is not taken into account, I would like to know a few things:

Why, when there are already suspicions that a child is autistic, are we sent on parenting courses not designed for autistic children? We are told on a daily basis how limited resources are and cuts, cuts, cuts, so why not send us on courses (which require time out of work, or childcare, or using up precious spoons for those of us who are autistic or chronically ill) that stand a chance of being helpful?

Why, when there are suspicions of autism, is there a focus on what parents have done to cause their child's mental health difficulties?

Why is there such a push to diagnose attachment disorder when there is no evidence of early neglect?

Why is the Coventry grid still used when it is so bloody ambiguous, and as reliable as tarot cards (ie. the reader/interpreter can take anything they want out of the vague traits listed)?

Why is it assumed so often that parents are dishonest and not telling you the truth?

Why can you, the go-to place for mental health problems in children and adolescents, many of whom will be neurodiverse, not understand that a child's facial expression may well not match your expectations of neurotypical matching of emotions?

And, for that matter, why do you not understand that many parents of autistic children (diagnosed or undiagnosed) are also autistic and may tell you very matter-of-factly about home life without being upset, or appearing vulnerable. This isn't because we're telling you porky pies, in my case it's because the things I've told you have been rehearsed in my head over and over to make sure I'm fluent during appointments, to make sure I don't waste time, yours or mine. I do my crying, my vulnerability, but it's at home, my safe space. It's masking, just like my son does, except you don't believe in masking, do you?

I often wonder if the people we see are so disconnected from our day to day lives that they cannot see we are real, intelligent, caring people. It must be much easier to assume we're a bunch of no-hopers inflicting our crapness onto our poor children.

If they knew what it was like from our point of view, would things be different do you think?

Saturday, 1 April 2017

Wrexham speakers' day: Part two.

I was going to apologise for writing something else when I'm not really in any fit state to write it, but I'm not going to.
I'm tired, my brain is fuzzy, i want to go back to bed, but there's something else, something strange that I want to tell you about.

I've never had any faith in my abilities, I'm hyper aware of my bad points, the way I dress, my practical hairstyle (if you can even call it a style!), my intensity that has the power to irritate and bore at the same time, and many more to boot. I've always felt like a disappointment, and I'm sure if you ask the right (or wrong as the case may be) person, they would confirm this. To so many people, I'm just not good enough.

Before going to Wrexham I was cowed, beaten down by having to fight for everything yet inevitably fail, and had no confidence in myself. I could fake it, but it was a front, a mask, and never felt real.

As I walked through the station to the first train of the journey I was crying, silently hoping that my husband would give me permission to back down and not go (not that I need permission you understand, more that I wanted backup that my instincts to run were correct). My shoulders were hunched up around my ears. At that point I would have gladly chosen to not exist, to not go through something I had foolishly chosen to take part in.

But I changed in Wrexham. I've no idea if this change will be permanent, but it's something I will hang onto and go with the flow of this ambition I have unexpectedly found, and this new found confidence in myself.

In Wrexham, despite my eternal scruffiness, I belonged. I was with people who didn't have the societal rigid expectations of fellow human beings, no-one looked down on anyone else, we were all equals in our own individual ways.

I don't think I've ever felt an equal in proceedings, so this is a very new and exciting feeling for me.

I came away from Wrexham with my head held high, with a glimmer of an adventurous soul sparking inside me, ready to start planning the next step in my life.

At the same station that I had trudged through in tears, I returned, and this time it was my husband in tears as I strode towards him, confident and grinning.

The guard on the last leg of the journey was drawing on passengers' tickets as he checked them. The photo above is my ticket, something I will keep to remind me of my trip to Wrexham, the one that changed me. The drawing shows me, a passenger wearing earphones, and smiling.

Whoever I am, no matter how I dress, how I look, how intense and annoying I can be, how stubborn I may be, it doesn't matter. I am me, I will always be me, and I am good enough.

I've found my people, I've found my spirit, and I will not be letting that go.