6 things autistic adults want you to know when you discover your kid is autistic

I’m on a lovely solo mums group on Facebook and today a mum posted about her concerns about discovering her young daughter might be autistic.  There were a few others who were on a similar journey and for some reason – I was probably avoiding doing something else! – I put together a post with all the things I thought they should know – and by the time I’d finished I thought, do you know what? I should blog that!

So here, thanks to the inspiration of those lovely ladies, is that list, for parents who want to do the right thing in supporting their awesome autistic kids and not get drawn down the path of trying to mould them towards neurotypical norms.

1. Autism is not a disease or a mental illness

Autism is not a disease or a mental illness, it’s a different way of being. It is however a disability because the way the world is set up is disabling to us. There is nothing wrong with being disabled. (As someone who initally baulked at the disability label I’d like to apologise to the disabled community at my ableist attitudes to the word disability and my seeking to distance myself from it, you learn better you do better and hopefully I’l continue to learn).

2. We prefer ‘autistic person’ over ‘person with autism’

When autistic people are surveyed, it’s usually 90% plus that prefer to be called autistic people rather than people with autism. Using the terminology ‘autistic people’ is called Identity First Language or IFL as opposed to Person First Language or PFL which is ‘people with autism’. Academics, educationalists and people who are just putting their oar in will often tell you you should use PFL, but they’re not autistic so it’s not really for them to say. If an autistic individual expresses a preference for PFL respect that, but if you’re using generalised terms, use IFL. Autism is not an add on, it’s the way our brains are wired. I am no more a person with autism than I am a person with femaleness.

3. The Puzzle Piece as a symbol of autistic people is offensive and ableist, please don’t use it or support organisations that defend its use

This is a big one. Please show your kid that they are not missing a piece, they don’t have to be made to fit, they are not a puzzle. Those are totally the wrong messages so just don’t start with it. I know this sounds harsh but it really doesn’t matter how you individually interpret it or how you can twist the narrative to make it seem okay because you/your kid happen to like puzzle pieces. Let them like puzzles for what they are, and not make them a symbol to represent autism, with all the internalised ableism that goes along with that. Autistic people didn’t choose that symbol it was chosen by non-autistic people for what we meant to them, and that’s really not okay.  So please, recognise the ableism inherent in it, don’t use it and call out people that do. Here’s a great article about the history of it, who can tell you about it far better than I can:


4. Applied Behaviour Analysis (ABA) is damaging to autists, even the ‘modern’ kind

Applied Behaviour Analysis (or ABA for short) is abusive, yes even the so called ‘good’ ABA that involves reward and not punishment. Tragically, it is the number one recommended therapy across the US and used widely in the UK and it’s big business so the chances are it will be marketed to you at some point. It is based on gay conversion therapy, and it’s founder Ivar Lovaas, the ’father of ABA’ said this

“You see you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense – they have hair, a nose and a mouth – but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build a person. (Lovaas cited by Chance, 1974, p76)”

Yeah you read that right. According to him, we’re not human, we not actually people. That is not someone whose advice you should be taking about your child. Please just don’t even go there. Listen to the autistic adults that have been through it – it traumatises people and causes long lasting damage to the mental health of the autists involved. It teaches ignoring your instincts and compliance above all else and that love can be traded as a reward. That’s not healthy for anyone and can be utterly devastating in so many ways including the impact it has on future relationships. So many people have made the case so much better than I can, and some wonderful people have put together a website with many many articles going into this further.


5. Listen to autistic people more than you listen to the parents of autistic people or so called experts who aren’t autistic

You wouldn’t take swimming instruction from someone who’d sat on the sidelines and watched people in a pool over someone who swam in it every day. Same thing. If I could tell you only one thing about autism it would be that what it looks like is going on to you from the outside is very very rarely what’s actually going on on the inside, so I can’t stress to you how important it is that you listen to autistic people who’ve actually experienced it – and listen to your kid when they try to explain what’s going on, don’t assume they’re just being naughty/overreacting. We literally experience the world differently to you so what we’re dealing with is totally different and often things you are not even aware exist.

There are many fine bloggers, FB pages, groups that you can follow – check out The Royal Circle of Autism facebook page where I share most of them regularly. Remember that the autists you are reading may be both verbal and non-verbal so please don’t fall for the ‘my kid isn’t like you because you can express yourself’ narrative that some self-proclaimed “autism mums” throw about, because it’s absolute nonsense. Many of the finest writers had no externally obvious use of language into their teens. They can help you no end to understand a kid who isn’t using language in the conventional sense.

And while I’m here, please don’t call yourself an “autism parent” – because a/ it’s your kids identity not yours (autistic parent is obviously fine if you are yourself) and b/you really don’t want to be associating with some of the martyr narratives that go along with that term and the damage those people do to their kids – stay in the safe lane!

A quick world of warning though,  you may have noticed, that we are very direct and unfiltered and if you’re not used to it you might think it’s rude. It’s not it’s how we communicate – and many autists find the neurotypical way of dancing round subjects and padding out with small talk rude as it deviates from the point) Neurotypical culture and autistic culture are very different in that respect. Some of us as autists will try to change our method of communication to fit in with neurotypical culture, but that is exhausting and we shouldn’t have to. If you are in our spaces online or in real-life, please respect that aspect of our culture

6. Be very very very wary of ‘early intervention’

Early intervention can do a lot more harm than good primarily because it often involves inflicting thinly veiled ABA practices on very young children who may never recover from that. Your goal should be to support your kid to grow up autistically and be the best autist they can be. I’ve sat through the National Autistic Society’s Early Bird programme for parents of autistic kids under 5 and it’s offensive, ableist and deeply patronising to the autistic community. I watched videos that no one in 20 years had notices what the autistic kids were actually doing because everyone had focussed on what they weren’t doing. As a result, their endeavours were ignored and not supported and instead of building on their development, the suggested interventions knocked them down, dashed their confidence and left them feeling why should they bother. Just be very very very careful. Here’s another great resource from In the loop about neurodiversity about the red flags to look out for in early intervention. https://intheloopaboutneurodiversity.wordpress.com/…

So there you have it, the six things I thought I would want people to know if they were just starting out on the journey of discovering their kid was autistic. I hope it’s helpful, please feel free to share, comment, ask questions.

And thanks to the solo mums for the inspiration to get this post written!


The big problem with the medical model of autism that barely anyone is talking about

I know it sounds like a click bait headline – but addressing this problem could be absolutely life changing for many, many autists, so I think that’s justified! Here’s why: loads of conversations online, inside and outside autistic groups, got me thinking about something major that’s missing in our discussions, and it’s this:

Many autistic advocates have spoken about the fact that the medical model of autism means that, by and large, only autists who’ve experienced problems/trauma seek diagnosis, and that warps society’s view of autism, leading society to think the characteristics of autistic trauma (e.g. meltdowns) are the characteristics of autism. However, while that is a huge issue in itself, there are two other issues with the medical model that are also damaging:

  1. Those autists who’ve managed to live autistically without problems are lost to our community. They don’t understand themselves to be autistic, because of society’s warped view, so all the things that they have somehow managed to have in place that have allowed them to do that are lost to us. That means we can’t learn from all that invaluable information so we all can stand a better chance of living like that.
  1. Autistic led support groups are often populated by many traumatised people. This has issues for communication, understanding and support that many are unaware of. I’m going to deal with that in my next blog. I’ll link here when I do, but right now, I’m going to focus on the first of these problems

So, what is it that leads to an autist living comfortably without diagnosis?

To be clear, I’m not talking about people who are masking here. It seems that most of those will eventually hit a wall where they do have problems and therefore seek diagnosis. I’m talking about people whose experience of the world and methods of communication is autistic, but they are able to be authentically themselves and advocate for what they need without it being a significant problem for them, and so never seek diagnosis, or even necessarily realise that they are autistic

There is to my knowledge, no research looking at this because how would people know they were autistic to be involved in it? From the people I know that I consider autistic in the way they think and experience the world, there are definitely some things that I’ve observed they have in common, here’s what they are:

  1. Privilege

This is how I first came to the realisation:

Someone on facebook shared a post attributed to Anthony Hopkins – famously diagnosed very late in life as autistic – and I can’t remember the exact details but essentially it was saying: if people aren’t for you, don’t get you or aren’t listening to you, move on.

And it struck me that if you’re an autist who’s in a position to be able to do that, to move on from anyone who doesn’t get you and still have all the supports you need to function then you’re never going to seek an autistic diagnosis. You wouldn’t need to. You’d naturally gravitate to people who shared or were open enough to accept your different way of doing and understanding things and your different needs

Equally if you were brought up confident/arrogant/cynical enough to just think there were a lot of ignorant/stupid/unkind people in the world, then you equally wouldn’t seek a diagnosis because you’d see the problem as external to yourself. I often meet autists like this online (diagnosed and undiagnosed), who can’t see what the rest of us are making a fuss about.

However, what everyone needs to realise is that to do that, to be able to make that choice to walk away from circumstances that don’t suit your neurology and only live and work in circumstances that do is a position of privilege. It requires certain levels of resources and support that many traumatised autists simply do not have through no fault of their own.

They may be children who cannot walk away from parents or caregivers. They may rely on spouses for financial or physical support for a disability and not be able to simply leave and still survive. They may rely on an employer for a job they cannot afford to lose. They may have teachers every day they cannot simply walk away from without there being repercussions in every other aspect of their lives.

Privilege comes in many forms and if we don’t understand how race, gender, class and any other privilege impacts our ability to create a world that is comfortable for us, then we are not showing true compassion to our fellow autists.

However, even if we are hugely privileged in all those areas, there can still be another factor that influences our ability to create the circumstances we need, and that is…

  1. Love

I know this might seem obvious, but if your autistic perception and experience of the world is accepted fully and you are loved deeply for it, not in spite of it, then you are more likely to have the courage to continue to be yourself, to advocate for your needs and to find circumstances that suit you, than if you’re brought up to believe that there’s something wrong with you that needs to be fixed.

This is where the kind of parents who see fighting for autistic cures and ‘normalising’ therapies as a sign of their love really miss the point. Fitting in might be what makes them happy and feel loved, but being allowed to live authentically and express our existence without judgement is what makes us as autists happy.

Acceptance and accommodation will reduce the overwhelm that leads to meltdowns much more than any ‘normalisation’ ever could. I know that that level of deep acceptance is challenging for many, because we live in a neurotypical world where so many people don’t realise what they consider ‘human nature’ is actually just ‘neurotypical nature’. If you’re in the midst of the picture, its hard to see outside the frame. That’s why love alone can lead those who want to support down a path that can do so much damage, love has to go along with….

  1. Acceptance

Try to imagine though, a world where autism wasn’t a medical diagnosis, where it was just a fully accepted natural human trait – like being left-handed for example. That just like being left-handed it was something that you realised you are by experience and people helped you realise through observation. We no longer force left-handed people into using their right hand, because that’s barbaric and unhelpful. But imagine if we still did, and then waited until they had problems, or got frustrated or couldn’t achieve what they wanted; and then instead of just trying out left-handed ways of doing things, we first subjected them to a lengthy medical process with lots of different professionals to make absolutely sure they were left handed; and then still decided they would be better off if they were right-handed, so subjected them to loads of ‘therapies’ to make them more right-handed. That is the literal equivalent of what happens to autistic kids in the medicalised process every single day.

What if, instead, we just allowed people to realise they were autistic, by talking about it. What if we just asked questions like:

“So are you one of those people who likes to hear other people’s experience when you’re sharing a problem, or do you prefer to just talk about what’s going on for you? Which makes you feel more heard?”

“Are you someone who finds it comforting for people to be direct and get to the point or do you find comfort in having small talk first?”

“Do you listen by giving eye contact or does doodling or looking down mean you’re really listening?”

“Do you usually notice every sensory experience going on around you in a space, or do you focus on the main social thing going on in that space?”

There are a myriad of other questions that you could ask to establish, without prejudice, the difference in neurology with your fellow human – and we just so happen to call one of those groups autistic and one group neurotypical. Just like we call people with an in-born tendency to use their right hand right-handed, and those with a left left-handed.

The future

If we lived in a world where autism was fully accepted by observation of difference and not diagnosis, then all autists would know about their differing neurology – not just those that experienced trauma. And we could all share our experiences then, and learn from one another. Those with the privilege, love and acceptance to never seek diagnosis, could share the practical things they’ve been able to do because of those things and could help look at how to implement those things for those who had not been so lucky. Those who had experienced the trauma and problems could educate others about their experience and find the love, acceptance, healing and practically support they needed to live authentically and contentedly. And with more autists living authentically we might start to address society’s conflated view of autism and autistic trauma, and the world might get a little easier for all of us and the generations that follow us.

I, for one, will continue to advocate, educate and share what I know to try to help that vision of the future to be a reality. I hope you’ll join me.

The Ableist History of the Puzzle Piece Symbol for Autism

I share this article so often I thought it would be helpful to reblog it as It seems that while there are many articles dealing with this issue this seems the most complete and easy to understand. Thank you Cassandra for putting it so brilliantly.

In the Loop About Neurodiversity

The puzzle piece is the most commonly recognized symbol for autism awareness. But many people are unaware of it’s ableist history.

On World Autism Awareness Day (April 2nd) , many neurotypical people show support and spread “autism awareness” for their autistic family members and friends by displaying the puzzle piece ribbon, wearing puzzle piece pins, and put puzzle piece stickers and decals on their car bumpers and windows. But one question is commonly forgotten; what do autistic people themselves think of the puzzle piece symbol?

While there are some autistic people who may identify with the puzzle piece, a large majority of autistic people don’t. Not only was the puzzle piece symbol used without input from the autistic community, but it has been used to stigmatize and dehumanize autistic people for decades, and continues to be used in this manner today. Despite overwhelming opposition for the puzzle piece symbol by…

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New Research Suggests Social Issues are Down to Neurotypicals more than Autistics

This is a great article and a concept that really needs to be fully grasped by the non-autistic community if Autists are ever to have the same life opportunities as the rest of the population.

Critical Neurodiversity

colorful-brains-560 Picture by Joan M. Mas

Autism is seen, in popular representations, largely as a social and communication disorder. Formerly framed as stemming from an autistic lack of a “social instinct”, the current dominant idea is that something is deficient or missing in autistic social cognition. Often referred to as a cognitive deficit in “empathy” or “theory of mind”, much research on autistic social issues has focused on trying to clarify and detect this inside autistic brains and minds. The search for an elusive broken “theory of mind module” or “empathy mechanism” in the brain, and its ensuing cognitive manifestations, however, has led to conflicting results – with some scientists even concluding that autistic people feel too much empathy rather than too little.

Another view is that this is not simply an individual neuro-cognitive issue, but rather a wider social problem. Against the idea that autistic people have too much or…

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There’s a war going on

There’s a war going on out here, and my people are dying.

People are calling us snowflakes. People are saying we’re making a fuss over nothing. People are saying they know better. People are saying everyone has a right to their opinion. People are perpetuating the ‘we are all on the spectrum’ myth that belittles our experience.

“You’re not really that different” they say, “This stuff isn’t important”

But no matter how trivial some think our struggle is, we are still being attacked. There are many people still saying we are an epidemic that needs to be wiped from the face of the earth, and we are still dying.

It doesn’t matter that we are on the side of fairness and justice, just fighting to be allowed to exist, because we do not have the resources they have, and so we are dying.

Of course, as in all wars both sides think they’re in the right, both think they are fighting the ‘good fight’. History will eventually judge the ‘good guys’ and the ‘bad guys’ in any war – and on the whole the people who are persecuting others just for existing and being who they are, the people who are denying the voice of those people, those tend to be seen as the bad guys. History might be written by the victors, but when it’s that clear cut, time reveals the truth.

The autistic side

On one side are the autistic people that accept, embrace and celebrate being autistic. We are the autists who understand that the struggles we have in the world are because the world isn’t made for us – whether that be not accommodating our sensory needs, our alternative communication, our alone time or anything else that we need to just exist as we are. And that’s all we’re fighting for, just to be allowed to exist as we are with the same rights everyone else has. The world is already adapted to neurotypicals, why shouldn’t it also be adapted to autists?

As well as us there are a growing number of amazing neurotypicals who are our allies. Some are NT (neurotypical) parents of autistic kids who seek out and listen to adult autists. They understand that forcing their child to be neurotypical is not a desirable or sensible goal. Others are just interested NTs who can’t believe how subjugated our voices are and want to do what’s right to support this wonderful community.

They are often the people who understand how important autists are to the world. Some see a broken world and they know that the only people who stand a fighting chance of working out how to fix it are those who can see it in a completely different way, and they want that chance for the world, and so they fight along side us.

The anti-autistic side

On the other side are many.

They are the autism professionals who do not bother to listen to the voices of autistic adults and base their assumptions on an outdated medical model. Worse, there are those who make money from ‘cures’ and therapies that traumatise our people.

I was told that I had to make my child uncomfortable in order for her to learn – why? Who learns when they are uncomfortable? That’s not learning that’s forced compliance. And because so many autists are taught forced compliance we are more open to abuse and manipulation, and we are being abused and we are dying. Some of us are dying at the hands of those that abuse and manipulate us. Some of us are dying because a lifetime of being told that everything we feel is wrong and we should to suppress it eventually takes its toll and we take our own lives. A 2016 study (see NHS website) showed that we are nearly 8 times more likely to take our own lives than the average population and our life expectancy is nearly 16 years less than the average.

Some of us are dying because of the lack of understanding in the medical profession, so that if we go into hospital because of our different reactions to pain or the differences in the way we express ourselves we are more likely not to receive the treatment we need. We are more likely to be dismissed. A recent study showed we are more likely to die in hospital because of not receiving the correct treatment than others with the same condition.

There are the NT parents of autistic kids who blindly believe those professionals and so think the autistic adults must be wrong. Even though it is our lived experience they think professionals must know better and we are being unreasonable to say otherwise. They continue to force their children to be like the perceived norm. When they sit in the Early Bird programme for parents with children under five, like I had to, they are reassured that ‘the good thing about autism is that no one will notice’. They are told autism is a bad thing that should be hidden – overtly or covertly but the message is there. They are told to make their kids more like the norm, and they believe that is what’s right because they are ‘good people’ who don’t question these things and think if it’s ‘official’ then it must be right. I feel sorry for these people. They are caught up in a war that is not of their doing and they are often the ones that once given the correct information swap sides.

Then there are the parents of autistic kids that are so obsessed with how hard their own lives are that they ignore their child and the communication that that autistic child attempts, because it’s not like their own. They ignore autistic adults who offer to help them communicate with their child. They write blogs that utterly annihilate their child’s privacy and autonomy. They write books that act as if their child is a voiceless object that they are a hero for looking after. They write plays like ‘All in a row’ or ‘Living with Luke’ that perpetuate the myths that are causing our people to die – and are celebrated for it by the autism professionals and organisations that benefit from treating our very way of being as if it’s a disease.

There are the parents who invent ‘cures’ forcing their children to drink bleach and selling it to other people who blindly accept and force that abuse on their own children. The say the white lumps they see the children bringing up/out after this are the parasites that are causing autism, when in fact those are chunks of their child’s own insides. That is how deep the hatred of being autistic runs.

Even worse there are parents who kill their autistic children because they believe they can’t cope, and they get away with it because of the ‘hero in a tragedy’ myths so many of these ‘autism warrior’ parents are putting out.

We are dying and these are the group that are directly killing us the most, but the myths that perpetuate from them are supported by many many professionals and organisations working with autistics and that is horrific and deadly.

I have little sympathy for parents who behave in any of these ways. Sometimes I wonder if the single minded focus they show, the fact they struggle to cope with the sensory and emotional challenges of caring for their autistic children, and the fact that autism often runs in families, means these parents are actually undiagnosed autists. But being autistic isn’t an excuse for being an abuser or murderer, even in a world in which you are surrounded by messages about autism that could easily make you think such things were sad but acceptable when it comes to autists.

Then there are, unbelievably, some autists on this side of the war. They look at their struggles, believe the hype and blame autism for them.  They see their autism as separate to themselves, they want cure, their goal is to be neurotypical, no matter what it costs them. They have been conditioned by all the others on this side of the war that who they naturally are is wrong and pathological. They have completely internalised that ableism. It is tragic. They become foot soldiers and say to autist advocates fighting for our existence ‘we are not all like you, you don’t speak for me’. The professionals and organisations who benefit from their view point parade them as examples of how grateful autists should be of their abuse, just because some autists believe the tragedy narrative. Those autists often attack us even more vehemently than the others on this side, so attached to their denial, and so desirous of the support of the rest of their side. They are single minded in their focus because their struggles are great and they genuinely believe that autism – not the attitude of those around them who support that belief – is the problem. I know those not willing to hear this yet will feel patronised and angry just by reading it, but I am one of the many autists for whom it is sickeningly hard not to tell the truth, no matter what the consequences.

Many of us have been through that stage of just wanting to be ‘normal’, many of us have been in denial precisely because of the societal myths around autism – for some this stage is just a passing phase, but some get stuck at that point in the journey. I hope one day something breaks through, some article, some comment, something that starts them back on that journey to lose that internal hatred of who they are towards self-acceptance and seeing the amazing gifts of being autistic and not just the challenges.


How will history judge this war?

As I said, where one side of the war is trying to subjugate the other, to deny their experience, their voice and their right to exist, those are usually seen in hindsight as the ‘bad guys’, even if it takes many years to get there. It doesn’t matter that they think what they’re doing is best for the ‘good guys’, it doesn’t matter that they think it would make things better for the world. All of the things most of us find abhorrent today were once believed to be ‘for the best’ by huge numbers of people

We don’t consider the extermination of the Jews acceptable just because the Nazis genuinely believed the world would be better without them.

We don’t consider slave owners okay, just because they genuinely believed that non-whites were a savage species and so it was okay to ignore their voice, own them and give them no autonomy over their own existence.

We don’t consider conversion therapies to ‘cure’ people of being gay acceptable, just because the people pushing them thought it was best. Did it make it okay because some gay people said they wanted to be cured? (And if we find those conversion therapies unacceptable why do some consider it acceptable that the same form of therapy is used to traumatise autists in to being ‘normal’ to this day?)

We don’t consider it okay for women to not have the vote and be considered the property of their husbands just because many people believed women were not as intellectually capable as men.

Being autistic is just as much a part of who we are as our race, gender or sexuality. Just as with all of those things, finding yourself born into a non-dominant category can present massive challenges in a world that is not made for you. The problem, however, remains the world, not us, as all the fights that those groups have battled and continue to battle have shown us.

What some people find hard to accept is that for autists with differing support needs it is still the case that it is the lack of accommodation and understanding in the world that is the problem.  That is why functioning labels are offensive – what our support needs are bears no relation to how we ‘function’ internally as most people would understand it.

Those of us who are non verbal or need support with our physical needs do not have less right to dignity, respect and access to communication than those who have less obvious support needs and are able to communicate through spoken language. It is a spectrum and we all have different presentations on it (it does NOT mean a spectrum from ‘not autistic’ to ‘severely autistic’). I use spoken language and can usually move about but sometimes I can do neither of those things. Calling me ‘high functioning’ therefore denies me the support I need. For some whose experience is similar to mine this becomes too much over many decades and they take their own lives. We are dying.

Those considered ‘low functioning’ by society are regularly denied their rights and their privacy and no attempt is made to seek their consent about things in their lives that impact them or are about them. The injustice of that is only highlighted when considered against the background of both anecdotal and research evidence of non-verbal autists being written off as not having thought or feeling because they didn’t communicate in the way neurotypical society believed they should, who then  communicated clearly and eloquently once given access to appropriate alternative communication. Some of those non-verbal autists are amongst the most eloquent advocates, poets and writers in our community, but so what if they weren’t? Does that mean they shouldn’t have the rights or privacy that the general population take for granted? If you can’t communicate with someone, does that mean you can automatically assume they have no thoughts or feelings just because they are not expressed in a way you understand? Does that mean you can then use them however you want? Speak for them? Share their struggles through blogs, plays, books without ever giving them a say in that?

There is a war going on. I call it a war because we are being attacked and are dying as a result. We are dying because of the misconceptions around autism and the refusal of our attackers to accept our right to exist as we are.

I hope that eventually we will win, because we have as much right to a long and happy life as every other neurotype, but I don’t know if that’s the way the war will turn. The world is not made for us, we need both support and solace to access so many things. We do not have the time or resources either financially, physically or emotionally that the other side have, as so much of those are taken up just in existing in the world. But we are autistic and the focus we are capable of in the right circumstances is undeniable and we will continue to fight and find our way through.

Please help us, please be on the right side of history. Listen to autistic adults. Challenge the so-called experts when they tell you we are to be pitied, marginalised, normalised. Challenge people when they claim ‘we’re all on the spectrum’ to learn about what autism actually is, to go beyond the stereotypes and the myths. Learn about our communication and our culture and direct others to it. Fight with us, and maybe more of us will survive, because it’s been a long long battle and we have a very long way to go and we are so, so tired, as we drag ourselves onwards just for our basic rights.

We have a right to a voice even if no one has worked out how to hear it yet.

We have a right to dignity and respect and not to be used without our consent in someone else’s tragedy narrative.

We have a right to not be trained to be compliant making us vulnerable to abuse.

We have a right to be heard when it comes to medical treatment and not denied because of how we experience things internally or how we communicate externally.

We have a right to not be pounded by the weight of people’s ignorance and denial to the point that our suicide rate is nearly 8 times higher than the national average.

We have a right to not be blamed when we are murdered.

We have a right to life.

Curing Autism Parents

This is wonderful, practical and clear so just had to reblog!

Autistic Observations

Since I have been involved in the online communities of autism and autistic culture, I noticed a divide between self-proclaimed autism parents and allistic medical professionals, and autistic adults like myself.

Yet don’t we have the same goal, a betterment for autistic people? Chris Bonnello of Autistic Not Weird recently wrote with a parent of autistic kids about the hate mail she received about how she talks about autism.

I am against personalized hate mail, but I will admit to getting into arguments with autism parents to the point of being banned from autism support groups.

In my activism and life in general, I have received a lot of dismissive and hateful comments from autism parents. They insisted I was hateful and had no idea what it was like to be autistic. That I didn’t know about self-harm, stimming, incontinence, etc. That I was a burden to my parents and…

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Autistic Burnout: The Cost of Masking and Passing

This is really important to understand and is absolutely where I have been for a while now…

Ryan Boren

I’ve experienced several moments of burnout in my life and career. Being something that I neurologically am not is exhausting. Wearing the mask of neurotypicality drains my batteries and melts my spoons. For a long time, for decades, I didn’t fully understand what was going on with me. I didn’t understand the root causes of my cycles of burnout. Finding the Actually Autistic community online woke me to the concept of autistic burnout. When I found the community writing excerpted below, I finally understood an important part of myself. Looking back on my life, I recognized those periods when coping mechanisms had stopped working and crumbled. I recognized my phases and changes as continuous fluid adaptation.

These periods of burnout caused problems at school and work. I would lose executive function and self-care skills. My capacity for sensory and social overload dwindled to near nothing. I avoided speaking and…

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