Autistic at Work

Some stranger somewhere still remembers you because you were kind to them when no one else was.

I was asked the other day what I did “for work”.
So what I do:
* I serve on the boards of several organisations – all of which are involved with disability, most of which are led by disabled people for disabled people, some of which are autism specific. I even hold significant positions on some.
* I heartily believe in increasing the capacity and capability of disabled people, whatever that might look like for them, so they can live their good life.
* I study (disability studies).
* I work hard to try and change attitudes towards disability. I embrace disability with the social model and I embrace Autism as part of my culture and identity as much as being deaf is. I have disability pride, Autistic pride and I make no apology for that.
* I submit on legislation that impacts on disabled people.
* I serve on advisory boards and push hard for change.
* I attend various workshops hosted by Government Departments to ensure a disabled perspective is added to the mix whether they intended for that or not.
* I Chair a local disability advisory group so we can have an impact at a local authority/council level, I’ve long way to go on that one.
* I do online stuff – often obvious, sometimes not.
* I’m a parent and grandparent – roles I take seriously and commit to.

It’s been a hard road because although I think I am easy to work with, and I work hard, there are a lot of ‘office politics’. I thought the hardest work would be with those who are not autistic, those who are not disabled but I was surprised by how wrong I was. While I found acceptance from disabled people – those most doing the real work on the ground, those outside social media platforms. when I was most vulnerable I found acceptance from non-Autistics. This colours my point of view – I don’t regard all non-Autistics in a negative way, as a group to be attacked. Instead I view them as a group that could be open to change, to learning, I lean towards disabled people who can consider a wider perspective – those who try to understand a range of impairments. This is actually incredibly important as many Autistics have other impairments, as I myself do. I listen to genuine activists – those doing the true hard yards, not those blowing their own trumpet solely on facebook.

As a result, where there should have been community support there was often isolation and ostracising.
* I was often hurt and disappointed by my fellow autistics. There have been times of loneliness and struggle because I’m an autistic who can and will defend myself and my choices articulately to other Autistic activists and I’ve had this stated as “silencing others”, apparently so much so they can’t be named (ironic in a group of so called activists).
* I’ve had my words twisted into intentions or words I never intended and then broadcasted on social media.
* I was attacked by so called “Autistic leaders” who showed me they were nothing but shallow followers of one almost cult-like leader.
* I have had a so called ‘secret’ file made about me (except not so secret as part of it was sent to me).
* I’ve been stalked by fake profiles on FB – mostly all belonging to one person.
* I’ve had outright lies said about me personally – mostly by my stalker and his allies.
* I’ve been personally attacked by some factions seeming to think nothing is wrong with attacking my personal appearance, mostly by a male.
* I had my mental health attacked by a so called Autistic leader who failed to consider ableism (and got it wrong in any case).
* I’ve even been openly defamed with others (and at least that post had consequences for the person involved).
* I’ve had family members bullied by having things said about them that are simply not true and were quite frankly concerning. If they had been true they were evidence of grooming that some like to dismiss simply as “autistic behaviours”.
* I’ve had fb ‘friends’ feel the need to talk about me to my stalker, some have found out later just how wrong they were about me and how much my stalker is a problem in the Autistic community and they were left hurt and damaged too.

Why I am writing this post? Because the same factions that did the above, do it others, have done it to others for years, and continue to do so without any consequences for their actions. They hound others, they dogpile on those who hold a different point of view to their own. They seem to have a self-inflated sense of themselves and forget we are all humans, we are all in this together. They demand apologies for others and yet never give any for their own words or actions. I was lucky – I was strong and I found a village. But some won’t be so lucky.

You might wonder why I haven’t taken any legal action – I’ve been tempted to at times.
It’s because for Autistics to do so requires a huge commitment of time and energy and I have better things I want to do with my limited time. I don’t want my community dragged through a court system that won’t understand us and may not be able to actually change things.
I want to be creating change for my communities – real, lasting and positive change. So I no longer call myself an activist, I call myself an advocate. I will work alongside others and I recognise the place for allies and my fellow disabled people to contribute however they feel they can.

Choose your battles but never be afraid to fight for what is right. fb/heartforautismnz

Night is always darker before the dawn and life is the same, the hard times will pass, everything will get better
and sun will shine brighter than ever. Ernest Hemingway

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Autistic Advocacy

I’m seeing a lot of autistic toxicity on fb of late with Autistics attacking others – sometimes through misunderstanding, sometimes to try and push their point of view across as if it is the only point of view.
The problem is that it just creates tension for our community and for me personally it triggers PTSD because I was the subject of a huge harassment campaign by one autistic advocate that lasted years.
It’s ironic that my last blog post here (approximately 9 months ago) was on the same topic because it keeps happening. I wonder if it is because of Autistics social communication challenges or something bigger around human egos.

I’ve learned that many Autistics fear conflict – they don’t want to be pulled into the drama. They hate choosing sides but will if push comes to shove because they fear being isolated from their community because society generally rejects them.

Our community talks a lot about inclusiveness and acceptance but needs to do a lot more to promote it within our own community. When I was the victim of cyberbullying it was the NT community that supported me, showed me acceptance and inclusiveness, that demonstrated accessibility in action, and even helped me to forge a path to real life advocacy. Some Autistics did too – but most did so quietly behind the scenes, lest they became targets too. I’m grateful to those Autistics who stood by me when I was vulnerable. Those who did not I mourned for the loss of community and friendship I thought we had.

We need to get over the egos, get over being ‘right’ and really work on the issues facing Autistics rather than targeting individuals. We need to demonstrate true inclusion of those Autistics who may hold different views to us. It doesn’t mean we have to accept their way of thinking or being – we can show them a different way. But we should not be rejecting our own, shouting them down, and dogpiling on them.

Real life advocacy matters more than Facebook. Social media is just a tool – a clumsy one behind which lie many keyboard warriors whose life is only behind monitors because they don’t do real life advocacy that makes a real life difference for Autistics living their real lives.

Let’s be clear – I’m NOT saying that online advocacy doesn’t have merit, because it does. Many Autistics cannot do offline advocacy because it can be overwhelming, involve too many sensory issues, or trigger communication challenges that may be poorly understood. Many Autistics do online advocacy through writing such as blogs – that’s great. I’m talking specifically about those who live only on Facebook and who are mostly just keyboard warriors – determining what is and isn’t supposedly acceptable to the Autistic community, especially when it targets individuals. I’ve seen too many of my community hurt by this behaviour, I have seen Autistics driven to the brink of despair because of this.

For me personally, and every Autistic has their own journey, advocacy has become about what gains I can make for our community in the key areas of education, legislation, and disability services. Sometimes I get to dabble in other areas too around inclusion, language, accessibility, employment, acceptance, and so on. Most of my advocacy is off line now – the growing toxicity confirms for me it was the right decision for my mental health. But I still do some advocacy online – mostly trying to change attitudes in a more gentle way, and highlighting my lived experience or that of other Autistics who give me permission to share.

I wish I could call people out but I’ve learned, over 10 years now, nothing happens when you do. People will continue to side with the oppressor, or stand by silently which is much the same thing, and the person who suffers is the one who does the calling out. So the best thing is to live a good life, to do the advocacy you want to be remembered for, and to empower Autistics to be the best them they can be.

Autism Advocacy and the way forward

Some Autistic advocates are stuck in the past.
Too bad it is 2016 and there is real advocacy to be done rather than petty cyber-bullying.

They spend their time criticising autistics, berating parents, rehashing issues from years ago, and trying to boost their ego by counting numbers of and in groups and pages, counting PMs, and promoting themselves as some sort of leaders.

Some Autistics have learned from their mistakes and moved on while it seems some “seniors” can’t even take responsibility for their errors and impairments.

Fragmentation of the autism sector in NZ will never heal while this behaviour continues. There will be little progress while NTs can witness such social dysfunction from the autistic community.

They claim to mentor but the only people mentored as future leaders are those who are ‘aspie’, hardly inclusive.

That said some complaints are legitimate – the need for more autistic voices around the table, the need for more autistic input at conferences, the need for more autistic input at government health levels, more autistic input into education, laws, policies and politics, more opportunities for autistics to contribute and not have their ‘voices’ silenced or marginalised.

The sad thing is too many voices are excluded. Sometimes it is because various disability groups become more powerful, sometimes it is because some people push themselves forward as leaders and others are left to trail in their wake.

Sometimes, whether we like it or not, advocates that get heard the most are those who are white and middle class. But in the end ALL autistic ‘voices’ are needed because all experiences are valid. All minorities have to be ‘heard’, all socio-economic groups need to be heard. And Autistics themselves need to be heard.
Not just parents, not just middle class, not just white, not just NTs.

Life is short. We donʻt want to waste time on things that really donʻt matter in the end…

The Journey

I realise I haven’t written here for quite some time. Life became busy – turbulent even – with health issues, advocacy (huge growth), work opportunities and challenges, and routine life things.

So this blog will be a reflection on this year. 

In February a close friend died suddenly. It was an event with drama as I had to go to the police station to fill in some ‘blanks’ for them, and then identify his body.  My friend had deeply challenged me, stretched me in my knowledge around the UNCRPD (United Nations Convention the Rights of Persons with Disabilities), encouraged me, and even at times upset me. The friendship we shared was genuine and deep and even today I miss his daily phone calls. It doesn’t take much to recall his face, his words, and the heartache of pain from loss. Even now, 9 months later, it can be hard to hold back tears. It has made me conscious of my mental health state which at times was quite fragile.

But I use this to remember why I do what I do. I’m in my advocacy work to make a difference for people like him. Those who have undiagnosed or hidden disabilities and for people like his disabled son who need access to services and supports.  The urgent need to have autistic ‘voices’ heard, to push back against marginalisation. 

When you are part of the disability community you realise that many of us die younger than those without disabilities – through poverty, through medical issues, through being more at risk of mental health issues. It is a sobering thought.  One that keeps me working hard while I still have the passion and ability.

One of the good things, that created opportunities, was a change of government. This provided me with several openings to contribute to a number of work streams that this new Government provided as a vehicle of change.

Seizing the opportunities presented has kept me busy – and being autistic I have had to manage my down times to ensure I rest enough so I don’t burn out, while managing my mental health. 

On top of this my partner in life had a series of health issues – totally out of his control. This saw several trips to A & E and several stays in hospital (usually a week or two at a time). It was stressful, tiring and involved lots of travelling to and from the hospital which is an hour away in good traffic or at least 1 1/2 hours away in heavy traffic. It created a huge amount of anxiety so again something to be managed when you are autistic.
I also masked a lot during this time – I needed to be strong and appear capable to advocate for my partner in a health system that isn’t always friendly to autistics or those using its services in order to prevent them dismissing me or my concerns. 

And then there were conflicts that arose in some of the work I do. They say autistics have social communication difficulties. It was ironic that the biggest communication difficulties I encountered over the last few months were not on my side. There were differences of opinions and instead of robust, respectful debate there was a shutting down and ranting (and not by me). It left me isolated, marginalised and feeling extremely vulnerable.  I questioned my continuing involvement but found enough support and respect to push back.  And it has led to positive (potential) changes in how some meetings I attend are to be conducted. Sometimes you have to keep going, keep up the fight – even though it is hard, even if the cost is high. We have to improve things for the next people to come along.

World Autism Awareness Day

For those who do not know, ten years ago the United Nations designated the 2^nd of April  “World Autism Awareness Day.” There is often a call to do things to raise ‘awareness’ of autism.

Ten years ago, raising autism awareness may still have been necessary – perhaps it still is necessary in some quarters however it doesn’t go far enough. Awareness says “Have you heard about autism yet?” If people have, even just the word then they are aware. Step one is low, too low and too easily mastered.

But like all such days, the event often descends into yet another feel-good moment with little commitment required: change an avatar on Facebook, put on some colour that signals your awareness of Autism, maybe even attend an event about Autism.  The problem is most then just shrug their shoulders, dust off their hands, pat themselves on the back, and go on full of awareness but often without any real knowledge of how to understand, support, affirm or celebrate those with Autism.  The negative perceptions around Autism continue to be heard, often they form the dominant  narrative in any conversation about Autism.

Now is the time for a deep conversation – a conversation about acceptance.

In the case of Autism, the exhortation of the day, is often to light up buildings in different colours – most often blue.  Why?  Because nothing says, “I really care about autistic people,” like going to the trouble to install coloured lights on tall buildings and then flipping them on for a few hours. Presumably, people will then be led to wonder, “Why is the Sky Tower <insert colour here> today?” and eagerly turn to the Internet for answers, learning for the first time that a condition called “Autism” exists. Awareness achievement unlocked. All done. Except, it’s not. Nothing changes for those of us who are actually autistic. This event ends up being about us without us.
In an effort to combat this idea of lighting it up blue autistics activists promote “Red Instead” or “Light It Up Gold (LUIG)” or “Tone It Down Taupe” buying into the same false social construct. At the end of the day coloured lights or even just colours on Facebook do nothing to benefit us.

But you can do some real things that can make a difference for actual autistics something that goes beyond tokenistic changing of social media colours.
So how can YOU show acceptance to those who are Autistic, be they children or adults?
* share memes, blogs, writings by actual autistics
* value and celebrate the achievements of those who are autistic
* reframe Autism’s traits in a positive way when talking about autism on a daily basis
* lobby for services and supports for autistics and their families
* empower autistics by helping them find their ‘voice’ whatever form that might take
* for the autistics in your life: be mindful of their sensory needs, consider schedules/routines, be open to their communication needs/styles, help them plan and implement, be mindful of when they may need to retreat, demonstrate empathy, and support them by building them up not tearing them down.

 

Acceptance

Anxiety mental health symbol isolated on white. Mental disorder icon design

I recently had the opportunity to attend an autism conference.
To say I was anxious was an understatement – I was highly anxious. The conference was touted as being very inclusive of autistics, indeed a quarter of the attendees were likely autistic if not more.

But my anxiety was twofold: Firstly, I felt like I was entering ‘enemy’ territory.  Autism politics can be found in many places in Facebook and sometimes they spill over to real life. In my case I have avoided certain conferences due to this. But another autistic, reached out and I accepted. Quite why I don’t know, curiosity? A chance to rebuild? New beginnings? Whatever the reason I committed myself to it and so to prevent myself backing out I immediately booked my flights, which brings me to the second reason for my anxiety.

The conference was in an area I am not familiar with, and I was likely to be without some key support systems such as family and key supporters. I would be stranded if anything went wrong.  And I had no idea of what to expect.

As a result I took several steps to avoid meltdowns or shutdowns.

* Arranged to fly up the day before. This gave a chance to get my bearings, to test the food, to acclimatise to the hotel room, and ensured I wouldn’t be arriving on the day tired. By arriving the day before I was able to retreat to my room when I needed to during the day – whereas those who arrived on the day had a 2pm check in time.

* I took some foods from home. A sense of familiar in case I didn’t like the food there.

* I took my technology. Access to my laptop as well as my phone meant I had a means of calming myself when I needed to.

* I used the quiet room the conference organisers had thoughtfully provided. It was one of the best rooms for this purpose I had seen. A little darker than I prefer but I was mindful of others needs as well. It came in handy for some of the meal times when I needed things to be less overwhelming.

* I took some things I knew I would need to help me sleep namely a heavy dressing gown and a particular pair of night socks. Despite these though I didn’t sleep particularly well (I ended up with an ear ache on day 2 of my stay).  I still felt secure though, not anxious at sleeping in a different place.

* I arranged to connect with some people I had only ever met on Facebook. I felt I knew them well enough from online interactions that had anything happened they would have been able to help me.  These people were just as lovely in real life!

* I planned my travel allowing for many contingencies (flight could have been cancelled or diverted, sussing out airport transfers to and from the conference, planning my time). This was done almost daily for two weeks before the conference. It became my hyperfocus.  Can’t recommend this enough!

This brings me to the fact that for many autistics we have to know our triggers and try to mitigate them and this takes a lot of planning and being real about our limitations.  It means finding ways of dealing with our executive functioning issues, it may mean getting a friend to help if necessary.

I spent some of my time at conference learning, sometimes considering a different point of view (didn’t agree with all that was said!), supporting other autistics, eating, sleeping, fussing two dogs(!) but most of all networking. I am grateful to a small group of ladies who, though not autistic, reached out and showed genuine acceptance and inclusion. They made me feel safe. Safe enough to reach out to people I didn’t know or had never even met before (not even online!) I am also grateful to the autistics who included me, despite the politics. In fact no one said anything negative about me to my face, and believe me autistics would!

I appreciated the efforts of the organisers to try and be inclusive. Did they always succeed? No, but they genuinely tried. They made mistakes, actually some of those mistakes were not theirs but from the hotel where the conference was being held. I didn’t judge them for those because I make so many myself. Maybe I was just too grateful to be there, to have had the opportunity to be included. I was able to detach myself from being too emotionally connected around language or attitudes.

It took me about a week to recover on the surface from the conference.
I am not sure I learned anything new but being autistic maybe that wasn’t surprising. I did come away a little more inspired and that’s always a good thing.
I came away feeling good about the connections I made, a strengthening of some relationships and the development of some new ones.

I’m still tired from the conference.
So I have been kind to myself. I have to allow myself the recovery time as part of my self care.
I am very tired – I can hold it together for a long time.

Would I go again? Most definitely.

 

Cause for Concern

About a month ago, as like many other days, an article was shared to me that essentially looked at yet another cause of autism (this one focused on gut issues and autistics).

Parents and medical professionals (and researchers) often devote hours to and with a cause mentality. The issue I have with that is that
1. It diverts funds away from actually helping autistics, especially adults.
2. Often the ’cause’ turns out to be a false alarm, or a red herring, or applies to mice but not necessarily autistic humans.
3. The list grows ever longer.
4. What is the true purpose of finding the cause?

I would love to think that all the talk of causes would lead to real help for autistics in their daily lives.  Don’t get me wrong I am sure special diets and probiotics and eliminating gluten will help some autistics, just as they would also help some non-autistics.

But by far and away the biggest purpose to find the cause is so as to eliminate or mitigate autism occurring. One only has to examine the history of Down Syndrome to see that this argument is true.

And I wonder why people are so against the very idea that autistic parents could be a factor (passing on their autistic genes) or even genetics without a family history being involved.

I would like to think we are past the days of refrigerator mothers, older mothers, older fathers, younger mothers, younger fathers, corn syrup, Monsanto, mother’s fevers (well that’s one is still going), gut issues, vaccinations, etc. in our search for the elusive ’cause’ – the list is long and varied.

We need to get past the whole cause mentality, and instead look to acceptance – accepting the broad diversity of humanity and learn to accept and affirm differences.

Which brings me back to inclusion. Because sometimes it seems to me the cause mentality is an excuse not to accept difference, to not include those who are different. And that means you are seeking to not include me, or my autistic offspring.
And I take that personally, how could I not?

You might say “but we don’t want to get rid of people like you!” Just who are people like me?  You mean ‘high functioning’ autistics? Because how will you tell? And who is to tell who is actually high functioning? Are we going to talk degrees of functionality? Or those without comorbidities? I count all autistics as being just like me.

I’d rather we spent our time, efforts, and money, in helping autistics to survive: with housing, with employment (if they are able), with the basics in life.

Inclusion

I’ve been doing a lot of thinking about inclusion, in a range of situations, for those who are disabled.  These thoughts are a result of a number of events that have impacted me personally or impacted others I know who are disabled.  I am aware that inclusion is not taught and rarely is it modelled, both these things have to change. 

 

In education: inclusion is not just about being mainstreamed.  This was a prevailing thought at one time. So much so that there was a movement to force the abandonment of special classes.  However mainstreaming, as someone once said, can actually be main dumping. Inclusion is being included sure, but it is more than that – it is being accepted, listened to, and having accommodations made so that FULL inclusion becomes a reality. It’s allowing inclusion so the person can fully participate in their education which isn’t just at early childhood but includes primary, intermediate, high school, and the years beyond that. It’s not about pathways that lead to exclusion.
It’s about providing opportunities to be included beyond what the disabled person may have hoped or dreamed of. 

 

In health: inclusion is about having our voices heard when it comes to both our health and our disabilities. It means not having health professions deferring to support workers but listening to the voices of the disabled, we know our health issues, most of us are more than capable of articulating them.  Inclusion is about not being patronised to , not being ignored, not being dismissed.  It’s about listening to the many ways we may communicate: from voices, to AAC, to behaviours.  It’s more than just hearing the voices it’s about listening and finding ways to accommodate views which may differ. It’s about finding ways to meet the needs of disabled. It’s definitely not about pathways that lead to seclusion.

 

In organisations: inclusion is not just being part of an organisation. It is also not just being accepted (which can mean just being tolerated). Inclusion at this level is about being valued for the contribution you can make, about having your contribution actively sought out, about listening to ideas that may be different from your own. It can be about valuing diversity of people, views, and ideas. It can be about sitting around the table and looking at the voices that are missing and should be there. 

When it comes to disability it may mean non-disabled having to make concessions, and going the extra mile to ensure those voices are heard.

 

Some may think this is PC gone mad. But it is actually about rights cemented in law that New Zealand has signed up to. The UNCRPD (United Nations Convention on the Rights of Persons with Disabilities) and the Rights of the Child (NZ is failing that one). It’s about the implementation and action plan connected to the Disability Strategy.  It’s not just about funding, it’s about resourcing which can be so much wider than just money. It’s about people.

So inclusion is about people, all people, being given the chance to fully participate and contribute and having their participation and contributions acknowledged, valued,  about those things not just being tolerated and not talked about behind their backs.
Disabled people want to make a valid and valuable contribution in all spheres of the world.

Inclusion really is nothing about us, without us. If you are serious about inclusion, don’t shut us out, don’t attempt to justify shutting the door, don’t attempt to speak over our ‘voices’, don’t dismiss us. I hope we can journey on the path to full inclusion together, because society will be the better for it.

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