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…
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.
For those who do not know, ten years ago the United Nations designated the 2nd 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.
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.
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.
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.
When a child is newly diagnosed, parents often feel guilty and then fearful. They fear their child being developmentally behind, getting bullied, not fitting in, being disabled, being stigmatized.
A parent’s distress about receiving an autism diagnosis is often because of the messages society, and in particular professionals, family, friends and organisations send out about autism. Messages of “bewareness” and lacking hope.
It is always a choice as to the road to take, the attitudes we hold, and the behaviours we show our children following their diagnosis.
It is important to recognise that we should have our children’s back. We must be their greatest supporters. They must know that we are there for them. Society can be cruel but we can be their calm in the storm, we can shelter them from the hostilities they may face. Develop a thick skin against those who attempt to criticise your child or your parenting style in the face of autism. Don’t take the child’s behaviours personally.
To do this it is important to realise that autism is not some add on. There is not some hidden child beneath the autism. Autism is neurological – it makes up the core of the child. We cannot say we hate autism but love our child. Because to hate their autism is to hate their neurological make-up – something they can never change. This is the same as saying I hate their skin colour but love the child. It makes no sense. We have to love unconditionally.
Parenting any child is challenging – parenting is not a job for wimps. There will be highs and lows, there will be wins and losses.
Children often come with a variety of needs and challenges without autism – that’s just parenting. Blaming a child’s autism for making things challenging is the same as blaming the child. They can’t separate their autism, it isn’t an add on. It is them.
Find other autistic adults to help. We are a resource. Many of us are willing and able to help. We understand your child. Our autism may not be the same but will have much in common. We can often contribute as much, if not more than experts, because of our shared neurology.
Allow us to develop in our own time and in our own way. I hear of parents trying to get rid of their autistic child’s special interests and I mourn for their child. Our special interests are important for us, they may provide a career path later on. Our milestones are not necessarily going to line up with those determined by child development experts. Encourage us, give us opportunities, but don’t force us to comply with someone else’s developmental timeline.
Think carefully about therapies. Some Autistics are anti any medication or therapy. Personally, I am in favour of gentle therapies that guide and nurture a child. Therapies should allow the child to blossom without trying to ‘fix’ them or make them ‘appear normal’. Therapies and medication should be about what the child finds helpful – this is about them, not us or you as a parent.
I am not personally in favour of therapies that extend to 40 hours a week. A child needs to just be, to play, to laugh, to stim, to enjoy life without being locked into a demanding schedule that is likely to trigger meltdowns and involve considerable financial and emotional stress for parents.
Many parents head down the road of medications out of desperation and I despair of some of the medications children are on. Most drugs prescribed for children have not been tested in children. For example, while adults can give informed consent to participate in a clinical trial, children can’t because “consent” implies full understanding of potential risks and other considerations. Anti-psychotic drugs are sometimes given to autistic children and I fear the long term health implications of this. For example, Resperidone (often given to help with aggression) can cause huge weight gains. I would personally favour proven natural remedy treatments over hard medications. I recognise sometimes there is little choice, especially with some co-occurring conditions such as epilepsy, but explore options.
Give your child dignity by always presuming competence. Your child may be young, your child may have co-occurring conditions but your child is likely to understand more than you or so called experts think. There are many ways to communicate and if your autistic child is non verbal it doesn’t mean they have nothing to say. They need to be helped in finding other ways to communicate: this could be RPM, Apps, sign language, writing, art, even playing. Remember communication is the key, not speech.
Find other autistics. Your child (and likely you!) need them. Your child needs to understand there are others like him/her. Your child needs to realise they may be different but that is okay – different doesn’t mean wrong. Find autistic adults. One of the best things I did was find autistic adults as my son was his early teenage years. He realised he would be alright. He had someone to ask questions of that wasn’t his parent. He could view their lives and see hope.
Finally practice and promote Autism Acceptance. How you treat Autism and your Autistic child sends a strong message to society.
If you portray that your child is broken and needs to be fixed then that is the message that society will take from you. Those of us who are Autistic Adults believe we don’t need fixing, that we are not broken. That we have value and worth as we are.
That we have much to contribute (and many of us have already contributed) in a positive manner to society as a whole. Learn to embrace the Autistic culture because your child is part of it. And you could find even you are a part of it…it is not uncommon for parents to follow through on their own diagnosis following the diagnosis of a child.
When you are an autistic advocate, advocating for yourself and others, the journey is oft times a lonely and isolating one.
The people you care about and advocate for will hate you. Those you advocate to will not want to hear the message you bring.
These are the times when I feel fatigued by the mental strain and stress of the constant battle.
It’s during these times we most need the support from those who know what it is like to be in this difficult place.
I wish I could say that we advocate all support each other. But that would not be the truth. But for those of us who do support one another we find courage and strength to fight another day.
Even without such support I could not abandon those I desire to serve. Though there may be times when all seems lost or futile still I will try, for if not me, then who? I do not want to give up on ‘my tribe’, my people, or even myself.
Sometimes there are moments of joy – when someone ‘gets’ it, when there are successes. I cling to those moments, hoping I am making a difference. Not for me, but for my peers and those who will come after my generation.
All too often there are the moments of struggle, the times of self doubt, the in-fighting, the times when things seem hopeless. In those moments I will continue to push for more than autism awareness. I long for a way for Autism acceptance, inclusion, and affirmation to become a living, breathing reality, more than just a glib phrase or two.
I have a dream, a dream for real external change. But that dream has had to start with myself. My journey has been one of self examination (I have made many mistakes and failed many times). I have seen my knowledge and attitudes develop and be enriched by the unselfish sharing of others of themselves and their journey and insight. I have allowed others to impact my life just as I seek to impact the lives of others.
There are many advocates all working for a similar aim with regards Autism Acceptance and more. We won’t always agree with each other in the finer details, we may not always even like each other, but we are all trying to make a genuine difference, not just for ourselves, but for other Autistics.
For me, that means the collaborative approach. One of moderation. One that puts me outside of many Autism Activists that I respect and admire for their guts and fortitude. But each of us has our own unique journey. I cannot be them, and I must be true to my path.
My journey means working with people, or even organisations who have different aims than me. Why? Because I have to use my ‘voice’, my presence, to make a difference wherever and whenever I physically can, where those opportunities present themselves for me to seize.
I know my choices have not always pleased others. I am sure there will always be armchair (or keyboard) critics ready to pounce. But I am doing my bit. I am acting on the call on my life.
So where am I going with this? I wish I knew.
It is my fervent hope that advocates will learn to work together more despite our differences, that advocates will learn to be more accepting of one another’s flaws and failings and build each other up in encouragement without judgement.
Difficult times will come but we have choices:
To not give into self-doubt that many of us are racked with
To not react in anger or disappointment to our fellow advocates
To work together in mutual support.
To actively look for positive ways forward in unity