How technology enables me to write.

There are a lot of bad things about the internet, but one thing we have to admit is that it has given a voice to those of uswho have not had one before. It has allowed us find people all around the world who think the same way we do about things; we are no longer bound to talking to people who we can see, or whose phone number we can find. If we have a view we can put it out there and find others who share it, or who will challenge us on it. Now this is not always a good or fun thing. The fact that anyone can put their ideas out there and find like-minded people, as we all know by now, has lead to a lot of dark and unpleasant views getting validation from all around the world. There is likely nothing you could say on the internet that would not have at least a handful of other people nodding in agreement if they were to see it. It`s also true that putting your views on the intenet for all to see is a very quick way to get negative attention in your life. It`s not just small, negative comments, there are a lot of people on-line who have had deaths threats over something as small as tweeting about a game. But I think all of that can lead to us forgetting quite how amazing it is that we have the chance to use the internet to put our voices out there.

I am autistic, dyslexic and dyspraxic and I think often about the fact that if I had been born in any other time in human history how hard it would have been for me to get my voice heard. Due to my poor hand-writing and spelling if I could not type my work out, and then have the computer spell check it, even I would not be able to understand it! I would have had to dictate my work to someone to write-up, and for most of human history the chances of myself or my family ever having been taught to read and write is pretty low. Even if we were able to blogs were not a thing. I would have had to write something that could be published, and not self-published, as we would not have had the money for that. The chances of me writing about autism and disability for all but the last eighty years or so would have been pretty much zero. The truth is that for much of human history the bulk of human-kind was not even taught the skills needed to write a novel. In fact the idea of writing in all but a few upper-class white men was actively discouraged, and the idea that someone who was disabled in the way I am could become a writer was almost unknown. I am not saying there have been no autistic authors in the past (I am sure there have been) but I am also sure that there have been thousands of people who would have been autistic authors, but were never given the chance and died without achieving that dream. If you look back in time it is the same for women, disabled people, LGBTQ people, and of course anyone who was not white. While some people from those groups made it, most never did. Most people from those groups could never even dream of being writers. Of those who did dream of it most died unknown without ever having any of their work published. The financial, technological and social barriers were just too great. We are living in the first age in all of human history where the bulk of those barriers are down. Things are still so bad for all these groups of people that sometimes we can lose sight of this. It`s hard when you are having to fight for your rights just to exist in peace everyday to stop, and think about how different the age we live in now is from all others. We still need to talk about how bad things can be, and we can`t get to a place where we think “Things are better than they were so that’s ok.” especially not now that things for all those groups are starting to slip back, and hard fought gains are starting to be lost both here and overseas. But we also can`t deny the fact that while the Internet has lead to a lot of negative things, and given a voice and power to groups that wish to do harm to others, it has also given us a voice, and a community which we can use to fight against that.

I guess my point is that while I get frustrated both with writing and the internet a lot of the time, it is worth keeping in mind just how incredible the situation we are in right now is. I can sit in my room and write this – it`s legible (even though I always slip a few misspellings past the spellchecker) – and put it online for the world to see. It does not mean I don’t encounter issues in the writing world due to my disability (I have written about those too!) and it does not mean that I am going to make it as a writer, and have a big audience for my work. But what it does mean is that even if I don’t I am still able to keep putting stuff out there as and when I feel like it. I can post it, share it and send it out to people I think might be interested in it – all things that even in my parents lifetime I would not have been able to do. It means that while there might be a lot of toxic reactions to things on the internet, and while it can be scary to put yourself out there, and open to that kind of come-back, disabled writers have a better chance of making our voices heard now than ever before in human history. It`s worth thinking about that sometimes.

PJ

Follow us on Twitter: https://twitter.com/Aut2W

You can find my book here: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34251.html

Autism and Functioning Labels

Autistic people are often divided in to two groups, namely Low Functioning and High Functioning. People who consider themselves to be autism experts have decided that some of us are `intelligent, productive, just a bit quirky, almost normal in fact.` This is the High Functioning group. And some of us are `not so productive, are severely disabled, and don`t really have a great deal to offer the world.` These people are seen as Low Functioning. The labels are often used to categorise autistic people in order to ascertain their needs. But rather than being helpful to autistic people, these labels can be incredibly harmful.

Imagine being viewed by the individuals tasked with sorting out your care needs as Low Functioning. It really is an offensive, derogatory, and belittling term. It is highly unlikely that the professionals who use this term are intending to be any of those things when they label someone as Low Functioning, but it only takes a few seconds to think about this terminology for anyone to be able to see what a truly awful description of someone`s abilities this is. In fact it is not just a description of the person`s abilities, it is a description of the person!

When a person is viewed in this way we don`t see their abilities, their aspirations, or indeed their value. We hold them back because we don`t see them as having the same needs and desires as everyone else. We don`t see them as whole, sentient beings. This means the person is undervalued by society, and as is often the case with disabled people in general, feared or pitied. The more we under value and dehumanize a group of people, the more likely it is that others will feel entitled to abuse them.

And now we come to the group of autistic people referred to as High Functioning, or as having `mild autism`. My personal view is that there is no such thing as `mild` autism. All autistic people struggle with the same, or very similar challenges. Most autistic people, for example, experience sensory and emotional overload which can lead to meltdowns and shutdowns. And this `overload` can very much dictate a persons functioning levels. So while autistic `experts` often see autistic people as being at a set point on the Autism Spectrum regarding their functioning level, most autistics know that their functioning level can fluctuate from week to week, day to day and even hour to hour. A person who is considered to be High Functioning, who may run a home, have a job and a relationship, can reach the point where they are barely able to function at all. They are unable to answer the front door, make a phone call, fix themselves something to eat. Many even lose the power of speech. It may be that the autistic person is not wholly independent and does have support needs, but is seen as High Functioning because they are able to do certain things. An example of this may be an autistic person who attends an autism event to speak about their own experience of autism. They may be perceieved as High Functioning because they can to speak out loud in front of a large audience. But that same person may be unable to speak on a one-to-one basis with an individual member of that audience. They may well have needed support to get to and from the venue, and someone to advocate for them when they are not giving their talk. This person may then be unable to leave their bedroom for days or even weeks because of extreme sensory and emotional overload. They may have explosive meltdowns, or shutdown completely and be unable to engage, even with their family. This is not `mild` autism. This is not `High` Functioning.

When an individual is judged by autism professionals to be High Functioning this can be a barrier to receiving support. When a person presents as intelligent and articulate this often masks the difficulties they may be facing day to day, and if they are written off as High Functioning they may lose out on much needed support.

Terminology comes and goes, changes and evolves over time. Professionals tend to use language that is current. When I look back at my own journey with autism – researching information when my son was diagnosed, and later for my own diagnosis – I realise that I too have used language and terminology that I would not use now. And so this is not meant as a criticism of autism professionals. Functioning labels are something that we have been writing about for some time. Many autistic individuals, and professionals have pointed out the pit-falls of functioning labels, and yet they still seem to be in use. Maybe it`s time we ditched the labels and treated each autistic person as an individual. You could call me `mildly autistic`. You could call me High Functioning. Or you could just call me Jane.

J

Jane

Follow us on Twitter: https://twitter.com/Aut2W

You can find my sons book here: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34251.html

Do Not Resuscitate.

Do not resuscitate is trending on Twitter this morning as the U.K wakes up to the news that some care homes were instructed to put blanket DNRs on all their residents. A new report claims that huge numbers of people were given DNR orders without being told, or spoken to. As you would expect this has been met with anger. People are quite rightly raging about the fact that elderly and disabled people were put in this situation, and questions are being asked about whether this lead to anyone not getting the care that could have saved their life. All of this is important and it`s great that people are talking about it, but it is far from new. This has been going on for months, and for the most part it was all done out in the open. Disabled people talked about how they were being asked to sign DNRs and there have been cases where families did not find out until after the fact that their elderly relatives had been pushed to sign DNRs. Some of these people might have long standing health issues that make it unlikely that they would be resuscitated anyway, but that is not the point. The point is that it should always be their free and informed choice to make whether they sign a DNR. In some cases even parents of young disabled children were sent letters saying it might be best to sign a DNR order for their child. I myself know of cases where people who had only the month before made it clear that they did want to be resuscitated were contacted by Drs asking them about changing it to DNR. There was no chance for them to talk to their family, and the idea that they might be taking up a bed that could be better used by someone who might have a better chance of staying alive was pushed on them hard. I don’t know how many people have singed DNRs or had DNRs signed on their behalf, but I do know it`s been clear from the start that if you are elderly or disabled then the pressure to do so will be there. This might sound strange to you, but when I saw that “Do Not Resuscitate” was trending, and before I looked in to why, my first reaction was not shock. It was “Why now?” Why not months ago when this was first being talked about?

The fact is the disabled and the elderly have always been viewed as surplus to requirements by this society, and above all by this government. The anger at this situation is good, and my hope is that people stay mad about it, and push for things to change. People are still dying every day with COVID-19 and while a lot of people are starting to feel safe due to things opening up the risk is still very real. This is true for vulnerable groups more than anyone. It`s not to say that people will die due to having a DNR order, but if someone who has one in place that they/their family did not know about does die, that question will always be there. We may well be looking at a winter spike in the virus so making sure to handle the second wave better than the first is key. But we should not slip in to the comforting, but false idea that things like this are a mistake on the part of the government. This is part of a wider patten that has been going on for the past decade. You can not be mad about this and ignore the rest of it. The cuts to mental health services, SEND, Social Care, the NHS and benefits have all impacted on the most vulnerable in society the hardest. This might be the most black and white case of turning around to elderly or autistic people and saying “We don’t want to give you this help when we could give it to someone we see as having more value” but it is far from the only time this has happened. It`s good to be angry about this. It`s good to want to do something. But you can`t do that if you see it as something which just happened without any context. You have to see it in the context of increasing private health care, with high staff turn over leading to more people going in and out of care homes, autistic people being placed in institutions sometimes for years at a time (instead of being at home when this hit) and for no reason at all, and a decade of cuts to the NHS. You have to see that disabled people and people who keep an eye on how the elderly are being treated knew from the start this would hit those groups the hardest. While we might not have had the new statistics to hand at the time, for months now people have been calling out the callous and cruel treatment of disabled and elderly people during this pandemic. The numbers of elderly and disabled people who have died this year are staggering, and the worst part is we knew they would be. We knew and yet were powerless to stop it. Those who did have the power to stop it also knew, but they did not care. In the U.S officials came out and said at the start of this pandemic that in their view it was only right for the old or sick to sacrifice themselves to keep the economy going. Now while this might not have been said out loud here, it`s been clear for a long time now that it was, and still is the view of this government.

I know as a disabled person that my life has no value in the eyes of the people who run my country. There is nothing you can say that will convince me otherwise; no argument you can put to me that will make me feel like I am not viewed as disposable by this government. When you see this report, and when you feel that anger try to understand that for a huge percentage of this country that is a daily anger stoked anew each day by some fresh outrage. I know it`s hard to pull the thread, to look at one thing that catches your eye and put it in context, until you realize the true scale of what vulnerable people in society are fighting against. But you have to understand that while the scale of the numbers being talked about might be shocking, the idea behind it is not shocking at all to most disabled people. We already knew our government would not only not be there to help us, but would act to make this harder for us. Think for a moment about that. Think about what you have to have seen and dealt with for this not to be a shock to you. COVID-19 looks like it will be with us for a long time, and while it might be hard and draining we all have to do what we can to help each other. That takes the form of wearing masks, and keeping apart where we can, but in it`s most basic form it`s means caring about each other. I don’t mean that in a overly sentimental way. I mean that in the most basic way of caring if others live or die. The elderly and the disabled have already been decimated by this virus. Now that people are starting to notice perhaps they will do a bit more to stop it. Because it`s not over, and it never will be until people step up and show the government that society as a whole does not view any group of people as surplus to requirements.

PJ

Follow us on Twitter: https://twitter.com/Aut2W

You can find my book here: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34251.html

 

Autism: Being Treated Differently After Diagnosis.

I was assessed for and diagnosed with autism in my late forties. One of the things I have noticed since my diagnosis is that the way medical professionals interact with me has changed.

I have a lot of medical appointments for various conditions. Over the years I have had some very good experiences with doctors, nurses, physiotherapists etc. And some very poor ones, as I am sure is the experience of most people. And yes I have felt patronised as a woman at times, especially by male gynaecologists. But since my autism diagnosis I have noticed that the way doctors and nurses speak to me seems to have changed.

At first I thought I was imagining it. After all, autism is not a medical condition so how would these medical professionals even know about my diagnosis? But then one day I went to see the nurse at my local GP centre for a blood test. When I arrived she said `Oh I was just about to phone you and cancel. I can`t do this appointment today. I don`t have time` She pointed to the screen on her computer and there was a letter inviting me for a health check. The letter made clear it was an appointment especially for autistic people. I told her I was only there for a blood test. She apologised and did the blood test, but there was something about the way she spoke to me – more slowly, a softer voice. I had seen this nurse many times over the years, and her tone was definitely different. Not unpleasant or patronising, but softer and slower. It`s hard to explain.

I asked at my next GP appointment and it seems that my autism is flagged up when my records are opened. I found this really unsettling. It`s not that I am embarrassed about being autistic, but I don`t see why everyone who looks at my medical records needs to know if it isn`t relevant. I can see why this might be important for some autistic people, who may welcome this and any adjustments that are made for them to help them feel more comfortable/less anxious at their appointment, but I just felt exposed.

One time I did feel patronised was after surgery and a few days later I was feeling really dizzy, my heart was racing, and my breathing shallow. The doctor I saw snapped at me and said `you just panicked Jane, that`s all` but it turned out I was severely dehydrated which is why I had been feeling so unwell. I thought that maybe this doctor had seen my autism diagnosis on my medical records, and consciously or unconsciously, treated me differently, and not taken me seriously enough.

Most of the time I have noticed medical staff speaking more slowly and clearly to me, and using a softer voice. Some might say that this is a good thing, and maybe a result of training they have received. And certainly many autistic people will benefit from medical professionals knowing in advance about their autism and adapting their interaction style to suit this. But all autistic people aren`t the same and each of us can have different requirements, and find different things helpful. And while pre-knowledge of a person`s autism may be helpful to both practitioner and the autistic individual at times, I am finding that it is not always advantageous. While struggling to read people`s intentions towards me at the best of times, now when I have a medical appointment (though most of them have been over the phone since the Covid 19 virus) I find myself feeling like I am metaphorically being patted on the head.

My autistic son has co-authored two autism books, had his writing featured in two others, had many autism/disability related articles published on different forums, including a few in The Guardian, and had his own book published a few years ago. And yet he always used to say to me that when he was working with organisations, helping to deliver training on autism for example to GPs or the Police, he never felt like part of the team. Despite his intelligence, experience and knowledge he always felt like it was a `them and us` situation. Not that his non-autistic co-workers were intentionally patronising or excluding him. Still he always felt like he was being managed somehow. It was as if he wasn`t an equal member of the team, but rather that they were typical/normal people – the standard by which we should all be measured – and that they had to adjust their speaking style when interacting with him because he wasn`t one of them, and never could be.

I always sympathised with him, and felt upset on his behalf that he was made to feel this way, however unintentionally. But I didn`t really know how it felt. After my diagnosis when my son and I attended autism events together I was still always there as his Mum or carer, and not as an autistic person in my own right. At one event however, I decided to disclose my autism when we were asked to introduce ourselves. Normally at these events parents would make a bee-line for me during breaks times to talk to me about my amazing son, and how we had given them hope for their own situations etc. But not on this occasion. Not one parent in the room spoke to me. When I went over to the tea trolley to get drinks for us they all avoided looking at me, or speaking to me. They clustered together in an `us` group while my son and I sat on the other side of the room most definitely in the `them` group. And for the first time I truly understood how my son must have been feeling all these years. Since then I rarely disclose my autism at events because it makes people uncomfortable, which in turn makes me uncomfortable. And after believing myself to be non-autistic for nearly fifty years it is difficult to now see myself as autistic. And so it feels really weird when professionals, such as doctors, and nurses see my autism diagnosis flag up on my medical records, and automatically treat me differently than they did before.

And I truly hope that during those almost fifty years of being `non-autistic` I never came across as `us` when interacting with autistic/disabled/learning disabled people, because when I am now seen as `them` I feel demoralised, excluded, frustrated, and `othered`.

Jane

Follow us on Twitter: https://twitter.com/Aut2W

You can find my sons book here: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34251.html

The A Level Debacle and Disabled Students.

A level students in England were unable to sit their exams due to the impact of the Corona Virus, Covid 19. This led to the government ignoring the predicted grades that teachers, who know their students so well, had recommended, and downgrading many students expected results, impacting on their chance of attending a university of their choice, or indeed any university. This left students feeling cheated, disrespected, and in many cases as if they have been failed by the government, and their lives have been ruined.

Since the A level `results` came out a few days ago the responses have included shock, confusion and a deep sense of outrage. On the positive side it is not just the A level students, their families and places of study that are speaking out against the injustice of the downgrading of results predicted by teachers, yet decided by a bizarre algorithm. The media, many politicians, and the Manchester Mayor are all vocalising their anger and demanding an end to this ludicrous, and quite honestly, cruel act.

This is of course a political issue and should not be viewed in isolation. The issue of class, and the undeniable impact on working class students has been discussed widely in the media, but for the purposes of this blog I want to talk about autistic, learning disabled, and disabled students in particular. I know this is an horrendous situation for all A level students affected, and I don`t want to take away from the gravity of this, but I feel it is important to talk about disability in the midst of all this chaos.

If you have a child with additional or specific needs such as autism, a learning disability, a mental health condition, or a disability of some other description, for example your child might be a wheelchair user, or have significant medical needs, then you will know how hard it is to access education in the first place. Many of the A level students will fit in to one or more of these categories, and they may well have faced a lack of choice regarding educational venues, a lack of support due to funding cuts, a lack of understanding of their particular needs by educators, and possibly their fellow students. Many disabled students and their parents have faced tribunal after tribunal trying to access the support needed just to be on the same level as non-disabled students. EHCPs (Education and Health Care Plans which sets out the health, social and educational needs of a young person) have been a source of continual stress and distress for many families. The list of barriers to education faced by autistic, deaf, disabled, learning disabled students etc. goes on and on. And those lucky enough to receive the support and resources they needed in primary school are often hit by the above mentioned barriers when they reach secondary school age.

It is hard enough for disabled people with good qualification to get in to the work place due to ingrained predjudice and a reluctance to hire disabled people. If a generation of disabled students have their qualificaions downgraded it could impact on them for the rest of their lives.

There are people far better equipped to talk about the challenges faced by autistic/disabled/learning disabled students than me. My own autistic son was mostly home educated, but we have had our battles with the education system, as well as good support at times. However, I did not want to let this time pass without talking about how hard it can be for autistic/disabled students to access education – many quite literally can`t even access the buildings – and I can`t even imagine how these A level students and their families, and the educators who have supported them, must be feeling right now. To face barrier after barrier just to access something that should be a basic human right – a fulfilling education – only to have it ripped away is deeply unfair. To know that you have done your best, and that your teachers have given an honest opinion of your expected grades only for it to be ignored must be infuriating. This is just one in a long line of shocking, unfair and unequal aspects of life that autistic/disabled/learning disabled people have to face every day of their lives, for example access to transport and healthcare. Autistic/Disabled students are used to inequality in education. It is a constant battle. The A level debacle feels like a real kick in the teeth for all A level students, and I feel very sad and angry for each and everyone of them. But knowing the monumental challenges that many disabled students face just to be in the room with non-disabled students, I can`t help but feel an added layer of anger for them right now.

My personal view is that a students educational success should not be measured by exams. And that the education system needs to be far more individualised. However, as exams are the accepted norm at present then all young people should have equal access to education, and a fair grading system. The downgrading forced on the 2020 A level students is profoundly unfair, and shines a stark light on the inequality faced by poorer students, and autistic/disabled students alike.

Jane

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You can find my sons book here: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34251.html

Autism and Sleep

The Covid19 crisis has brought about lots changes for many people. These include working from home, not being allowed to see our loved ones, not being able to go out socially, and the wearing of masks. In the midst of all this several people have spoken about how their sleep patterns have changed.

People have talked about restless nights filled with anxiety, waking up suddenly with a panicked feeling, dreaming more often and more vividly, and of nightmares. Lack of sleep, broken sleep, and night terrors are horrible for anyone to experience, and in the middle of a pandemic it`s no wonder that this very real threat is seeping in to our sleep, and in to our dreams. If you are someone who normally sleeps well, or reasonably well, then for you this will certainly be a strange and worrying consequence of the unusual time we are living in.

And this brings me to autism and sleep. Many autistic adults experience all of the above, all or much of the time, and often have done throughout their lives. Without wanting to generalise too much, autistic children regularly have difficulty falling asleep, and staying asleep. This can continue throughout autistic people`s lives. Feeling tired all of the time, struggling to think clearly and a lack of energy can have a huge impact. When this accumulates over a short period it can lead to stress, mental fatigue and a feeling of being unwell. When, over a long period, poor sleep becomes the norm it is very hard to focus, to achieve, to move forward with life. People can become stuck. Much of the time just getting the basics of life done can feel like a monumental task, and often even these things are missed. Executive functioning – something that autistic people often say they struggle with anyway – becomes practically non-existent, and just getting through the day can be very stressful. Sleep is so important for our mental and physical health, and when we struggle to fall asleep, wake constantly throughout the night, or are woken by vivid dreams and nightmares, it really can have a serious effect on our outlook on life, and on our ability to take care of ourselves.

Waking suddenly with a feeling of panic is scary. Sometimes it`s from a nightmare – that seems all too real in those first moments, before we are fully awake – and sometimes we don`t know where it comes from, but our hearts are racing, and our breathing rapid as if faced by a terrible danger. For autistic people who experience this, and indeed non-autistics, it`s a strange place to be; longing to fall asleep, but being afraid to fall asleep because we know we are likely to have vivid, often unpleasant dreams, or wake suddenly with an unknown fear.

There are things that help with sleep issues: having a routine leading up to bedtime, avoiding screens for a few hours before bed, lavender oil, a warm, milky drink, cutting down on caffeine, relaxation/meditation exercises. These things may work for some people, and to varying degrees. However, for many autistic people sleep deprivation stays with us throughout our lives.

When the Coronavirus crisis is over most people will go back to sleeping peacefully through the night. This may take time as the impact of this virus will be huge on many people`s mental health – autistic and non-autistic alike. Sadly, when that time comes many autistic people will still be struggling to fall asleep and to stay asleep, our physical and mental health being negatively impacted as a result.

Of course not all autistic people struggle with their sleep, but if you do and you have found something that helps, it would be great to hear about it! 🙂 Jane

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You can find my sons book here: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34251.html

Why Autistic Authors `Aut` to be Read.

Why do autistic authors need to be read? It`s a fair question in a way. When you look up “Autism expert” most of the names that come up on the first page of search results are non-autistic authors. You might look at them and think “Well these are all names I know. People who have been writing and teaching courses on autism for years.” You might think that if you only have time to read one or two books that month, that you should prioritize theirs` as they are at the top of their field. I would advise against that. For a long time the field of autism writing has been dominated by non-autistic authors. While it`s not that they have nothing of value to say on the subject, a lot of the big-name non-autistic authors have clashed with autistic people over the years. In part due to the fact that they often stick by outdated ideas such as the idea that there are not a lot of autistic women, even though the autistic community tells them very clearly those things are not true. We only started talking about autism seventy years ago. This is a new field and people who study it should be thrilled with new ideas. The more you find out and understand the better. If you are going to call yourself an expert, and a teacher then the idea that half of what you learned in the 1980s is now outdated should be a source of joy for you. As a teacher and writer new knowledge and information, and most of all new ideas should be what you value above all else. The idea of saying about anything “No I reject that” even in the face of overwhelming evidence is silly. But to say that to a community of people who are telling you something about themselves is downright offensive. It`s not that non-autistic authors have nothing to say, or should not get to be part of the conversation – they do and they should. But the best of them, the ones worth reading, understand and say often, and loudly that they can never be true experts. They can learn from the real experts and put all that knowledge together in one place, and explain it in ways other non-autistic people might understand better, but that’s all.

So how are autistic authors different? I have known I was autistic most of my life and I’ve been writing about autism since I was twelve, but I still learn something new every day that I read the writings of fellow autistic people. It`s through reading the work of other autistic writers that I have been able to better understand myself, and the way my mind works. I sit down to read a blog and find myself thinking “That’s me, that’s what I do!”. Sometimes it`s things I have never noticed but instantly recognize as soon as someone else says it, and sometimes it`s things I have known about myself, but never been able to put in to words. Autistic people are not some kind of plant or animal; we are able to tell our own stories and to talk for ourselves. I understand that not all autistic people are writers, but neither are all gay people, or all black people. It`s still not for someone outside of those groups to talk to the world about them. One thing you hear from parents a lot is “You are not like my child. You can write and talk and my child can’t.” Fine. But you would be amazed how many days I can`t do those things. And if you don’t want to read what I have to say that’s ok. There are a lot of non-verbal autistic people who write too. You should read some of their writing. And that’s kind of the point.

This is not a blog to say “Read what I write!” I mean that’s kind of what it is sure. But it`s also to say there are hundreds, if not thousands, of autistic writers out there from all over the world who should be being read. People who can teach you about meltdowns, autistic crashes, sensory overload, stimming, what it`s like to be autistic and LGBTQ, or autistic with another disability. Anything you want to know. It might be in books or it might be in blogs like this one. It might even be on Twitter. But whatever it is, it`s out there somewhere. And if you look past the big name non- autistic writers you will find it.

Will you read conflicting views? Yes, and you should do. Should you keep reading non-autistic authors? Yes, in some cases. But make sure they are your secondary reading, and not your first port-of-call for understanding more about autism. Whether you are autistic yourself or you know someone who is, or even if you are just interested in the subject, the best thing you can do is listen to the experts. And in this case the experts are autistic people, and if you want to see what we have to say all you have to do is look.

PJ

You can find my book here: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34251.html

Follow us on Twitter: https://twitter.com/Aut2W

Changes …

This will be the last blog posted under the name “ASK-PERGERS?”. After today we will be changing the name of this blog to “Aut2Write” We have also set up a new Twitter page under the Aut2Write name that will be linked to this blog.  ( https://twitter.com/Aut2W )

Why have we done this? We wanted to start something new just for our writing. Our old Twitter page has been useful, but at the moment it feels a bit busy and messy. We don’t want to get rid of it but we did want to set up a new page that was just for our writing: things we write together, and separately on autism, politics, fiction and more will all have a place on the Aut2Write page. And we would both appreciate it if you would give the new page a follow! (  https://twitter.com/Aut2W )

As you might have noticed if you have followed us for a while, we haven`t posted much of our writing lately. There have been few blogs, no new books for several years, and no recent magazine/news articles. I have written at length in previous blogs about why this is so I will not go in to it now. I will just say it`s due to autistic crash, depression and life. But all that will change soon as we are both working on new books, and full of ideas for things to blog, and write articles about. So it makes sense to have something of a fresh start. Aut2Write is a Twitter account just for our writing; somewhere that we can post our old blogs, writing and books, but also anything and everything new we write from now on.

We both aim to do a lot of writing in the future, and much of it will be about autism, but we will also be writing about politics, and even some fiction. We will still be using this blog ( under the new name Aut2Write) to post blogs, and we will of course tweet out links to any writing we do elsewhere. I wont go in to details about our writing here, but I can say it feels good to get back in to writing again. I find that writing and reading about autism helps me to better understand my own life, and its nice to think that our writing about autism might help others to do the same. When it comes to politics I am sure most of you would agree that it`s hard to write about disability and not touch on politics! As politics is something we both have a great interest in, and talk about everyday it makes sense to try and write more about it. We both also write fiction, but we have never said much about this on our blog, or on Twitter. But from now on we would like to! Again it`s something we both enjoy and want to build on, so it makes sense to have one page on which to talk about all of this.

With that in mind hopefully you will go and follow Aut2Write ( https://twitter.com/Aut2W ) and enjoy keeping up with our writing.

PJ & Jane

New Year.

The end of an old year and the start of a new one can be a hard time for people who find change difficult. It’s a time when the whole world puts a day aside to build up to a world-wide change that you can not opt out of, or do anything about. Plus it comes right on the heels of Christmas when things change in peoples` day to day life whether they like it or not. Even if you don’t `do` Christmas yourself, or try and keep it low-key, things around you will still have changed, e.g. lights being up around the streets, shops being closed, or people not being around who normally are. This year it’s an even bigger change as it’s the end of one decade, and the start of another. Again even if you yourself are not making a big thing about the new decade you will still not be able to get away from the fact that everyone around you is. It’s all over the news, there are fireworks going off and people will be asking you for your thoughts on the last ten years, and the ten to come.

I am aware that so far it must sound like I am quite down about the holidays, but that is not the case at all. In fact I love Christmas time, and I enjoy being able to look back on the decade and plan for the next one. But no matter how much I might like it I can never get away from the overload that comes with it. In a way that’s one of the things I find the most hard about autism; it’s not a case of if you find something hard you dislike it, and if you enjoy it you are able to deal with it. No, even if you love this time of year it will still be hard. I know I have not posted anything in the build-up to Christmas or New Year about how best to deal with it – and of course that is not the point of this blog as it would be far too late for that – but I still wanted to put some of my thoughts out there about New Year.

For myself (and I will write more about this in another blog) I am quite positive about the start of a new year/Decade. I know that logicically things are no different from one twenty four hour period to another, just because we use a different set of numbers to identify them, but I still like having a clear start and end date in mind when making plans. The fact that this is not just the start of a new year, but the start of a new decade makes it quite a good time to start long term plans. But as I say even with that positivity I have still been feeling quite overloaded for the past few weeks. I have had – as I always do – a lot of fun over Christmas and New Year, but there have also been days (or parts of days) where I have found it hard to do anything, snapped when spoken to, and felt low. I have dealt with these times the best I am able to, but I am sure (well I know for a fact) I am not the only autistic person who will have felt like this, and still might. In a way I am lucky as I understand why I feel like I do, and know that even though it’s still hard it’s not at a point any more where it happens everyday over Christmas. It’s something that I am used to having to deal with over the holidays, and I am aware it might never go away. Overload and stress are things I will always have to think about around Christmas and New Year, and I know that’s also the case for a lot of the people reading this blog.

Perhaps the good thing about New Year if you do find change difficult is that even though it’s a big change, it is the start of being able to get back to normal after all the change that comes with December. Once New Year is out of the way you start getting back to work, school or your normal routine. Things change back pretty fast from how they were in December. This can be hard in its self as you might have only just got used to the way things are by the time they start to change back! But at least you know if you get through it there will not be a spell of change like this for another year.

It can be nice to use the start of a new year as a time to start a new plan, and routine that can you can stick with for the next year, or perhaps even beyond, but in a lot of ways it’s also a hard time to start anything due to the overload that can come with the change. As I say January is the time most people get back to normal after having a break, but I know there are some autistic people who feel like they need a break, and a rest in January after dealing with all the change of December.

Overall it’s a strange time for everyone, autistic or not; people lose track of time, do things they would not do at other times of year, make plans and deal with change. But when you are autistic it comes with added stress. For some autistic people this might impact on them in a way they can deal with, and not stop them from having a good time, and sadly for some autistic people it will come to dominate the whole of December, and early January to the point where they can not enjoy this time of year. This can also change from year to year, as I say when I was younger I found this time of year a lot harder. It’s taken time, and a lot of work over the years (and it’s not, and never will be perfect) but I am able to deal with the change a lot better now than I was when I was younger. The point I am trying to make is that even if this time of year is hard it does not have to be as hard next year or the year after. I have not been writing much this year but that will change (Again I will go in to this more in another blog). So I would hope to be writing more tips, and advice for how to deal with Christmas and New Year when we are heading in to 2021.

Overall, despite the change and the overload that can come with this time of year, I do enjoy it, and always look forward to it. I am glad to be done with 2019 and the whole of the 2010s, and on to the 2020s.

I am writing this blog at nine in the morning on New Year’s day, and I hope I have started the year as I mean to go on. Change can be hard, but it can also be good when the fog of overload clears. Although I am not a fan of the idea of New Year’s resolutions I do think there is something to be said for the difference between a change that it forced upon you, and that you have no power over, and a change you decide to make happen. I can do nothing to stop there being change at this time of the year, but at least I can make the best of it, and try and make the change a good one. After-all, I am going to be overloaded anyway, so I might as well make the best of it.

You can find my new book here: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34251.html

Follow us on Twitter: https://twitter.com/Aut2W

And have a look at our books (at the time published under pseudonyms, but we did write them trust us on that!)  http://www.jkp.com/catalogue/author/1762

Autism Expert.

What makes an autism expert? It`s a phrase we hear a lot, but it`s mostly in connection with a non- autistic professional who has earned a degree in autism, and is now regarded as a world expert on the subject. One counter to this often brought up by autistic people is that we are the true experts. We have been autistic our whole lives, and we have had to spend a huge amount of time thinking about it: what positives it brings, and how to deal with the negatives.

For me when it comes to autism I think expert is the wrong word, or rather it takes on a different meaning when applied to autism. I am autistic. I have written books on autism, talked about autism to roomfuls of people, and spent well over a decade reading and learning about autism, and yet I still find out new things every day. If I spend long enough on Twitter each day I will come across a tweet or a blog by a fellow autistic that will teach me something new, or put in to words something I felt, but did not understand.

I know a lot about autism but I am still learning every day, and I hope to always be learning. You could call me an expert in the sense that I could talk to a room full of people on the subject, and I write books about autism. But you could also call most of the autistic people I follow on Twitter experts. It`s not that I don’t read books or blogs by non-autistic people, I do, and some of them are well worth reading, but in terms of learning something new about myself, that only comes from reading other autistic people.

I should be clear here, I am not trying to shut non-autistic people out. What I am saying is this; you won`t become an autism expert by reading one or two books by non-autistic professionals. In order to truly know and understand autism you must read widely, but you must focus on Autistic writers, and try to read them every day. Even if it`s only a small amount, all those voices added together will give you a much better understanding of autism than any one book or course will. We all lead different lives, and therefore different experiences prompt us to write, and we all gain understanding about ourselves gradually over the course of our lives. Sometimes, despite feeling like I know myself quite well and have a good understanding of what it means to be autistic; how and why I do the things I do and feel the things I feel, I will sit down and read a blog that makes me realize something about myself. Having that feeling of nodding along and going “Yes that’s me, I never realized that before, but yes that is me.” is much more common than you might think. Not only do I learn something about myself, or find a way to put in to words something I have always felt but never understood, but I learn something about autism in general.

Also, without wanting to sound arrogant, I know my own writing can have that same impact on other autistic people. That’s not a guess, I know because they have told me. It`s a nice feeling to know that something I have written has helped someone understand something about themselves better, or put in to words something they have been thinking but have never said. I know what it`s like to be on both sides of that.

The point that I am making here is yes, I know quite a bit about autism and that is drawn from my own life, from spending a lot of time thinking and talking about how I feel, and why, but also from reading the work of other autistic people on an almost daily basis for years. It`s fine to call people Autism Experts, but the key for me is, do they think they are done learning? If so they never really understood autism in the first place. And if they are non-autistic do they understand that we are not lab specimens to be studied, rather we are flesh and blood people who, like other marginalized groups, are doing our best to tell our own stories, and educate the rest of the world on who we are.

Any true autism expert would know that how ever much they think they understand, and how ever much they have already learned, there is always much, much more to know and understand.

You can find my new book here: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34251.html

Follow us on Twitter: https://twitter.com/Aut2W

And have a look at our books (at the time published under pseudonyms, but we did write them trust us on that!)  http://www.jkp.com/catalogue/author/1762