When I was in primary school, we went on a day trip to the local Friary in Pantasaph (that’s a place in Wales in case you thought I was talking in Gobble-de-gook). In the gift shop I bought my Mum a little stained-glass plaque with the prayer of serenity.
It sat on the TV stand for years, and I didn’t really understand what it meant, but I’ve learnt its value over the years:
Wise words indeed. At the end of March, I was bombarded with criticism for my comments on anxiety being a part of Autism. I have now learned that it is not technically part of the Autistic brain, but that due to the way the Autistic brain interacts and reacts to much of the world, intense anxiety, is often caused. So, whilst it is part of the Autistic experience, it is not part of the Autistic brain.
I took quite the battering for that genuine misunderstanding and mis-naming, but as a part of that I found a positive as I became more aware of the Actually Autistic Voices Community (AAV). I decided to learn more and truly grow my own awareness during April, Autism Awareness Month.
What a journey that has been! I have heard many people discussing taking the opportunity in this current time of isolation to engage in a period of reflection and look at what is important in your life.
Anyone that knows me, will know my commitment to human rights and social justice. That this is a huge part of my life, pat of who I am and has been since my teens. In 2015, I had the opportunity to work with a group of Autistic teenagers in a summer camp, and since that day I have been volunteering as a youth club leader, which has evolved into 2 youth clubs and an a much-needed adult social club.
The value I place on the rights of my Autistic friends is massive. Added to even more when my son Patrick, was diagnosed as Autistic in 2018 at age 9. This year, I really felt ready to take my learning to a new level. To take in a whole new world of viewpoints.
I have shared a lot of what I have learned during the month on my social media pages and I am not going to duplicate that in this piece, but all of my posts will be collated and available on my website under a dedicated section. Please be patient with me in getting that up and running as this working from home and home-schooling business, whilst looking after 3 children, one of whom needs continuous engagement leaves little time left over for updating websites, drinking wine or reading the mountain of books on my bedside tables.
What I will say is, the biggest part in growing my awareness this month has absolutely been growing my own personal self-awareness. Finding the strength to look inwardly and realise that just because I thought I was an amazing Autism Advocate, doesn’t mean I actually am. My own vision, standard or goals in doing so, didn’t always reflect the voices of the Autistic Community. That’s hard to recognise, but is the first step in being a better advocate.
For a very long time in the past and sadly, probably for a long time to come, Autistic people are treated in many ways as less. Being told directly and indirectly that Autistic genes need to be cured, re-moulded, fixed, made to ‘fit in’. Implying or rather shouting that being Autistic is wrong, less. Autistic people are without doubt disabled, but we need to ask ourselves are they disabled by their own neurology or more so by the society they live in?
It’s a pretty deep philosophical question, but one we really all need to start looking at. Because most of us, in some way or another take an Ableist view of people who are different to us. Either, feeling they are less capable or feeling that they should be required to conform to our own master standard of normal if they want to be considered of equal value. Lets’ call it what it is, it’s bullshit. None of us has the right to place conditions on equality.
I have had a few epiphanies this month. For example, always recognising that there was nothing ‘wrong with’ my son, he was simply different, but I have now a new view point on that altogether recognising it’s not about ‘wrong with’ but ‘wrong for’. What is wrong for my son? That we can change together, so he can function comfortably in the world. What can I learn from him, that can support other Autistic people
I have often considered Autistic people as having limitations and felt it important to recognise and accept that. But now I realise that ‘limitation’ is only a word that should be used if the person wants to do the task in the first place. Otherwise is it really a limitation, or just an alternative normality?
Much like me 20 years ago, feeling I needed to learn to scuba dive as it would be fun and cool. I tried it twice and hated every second of it, flailing around 6 inches under that water thinking I was going to drown, realising it was neither fun nor cool, because I simply wasn’t enjoying it, therefore why was I doing it!?
Much like the scuba diving pool, during April I was plunged uncomfortably into a period of self-doubt about my parenting, about my own history of advocating for my son and other Autistic people. I did a lot of soul-searching and in all honestly it has drained my physically and emotionally.
I have gotten a little embroiled in a war that is raging, not just the one going on inside my head, but about who are in fact the appropriate Advocates for Autistic people. Much of the Actually Autistic Voices community stating their right to speak for Autistic people as they have a better understanding of actually being Autistic.
I cannot disagree and feel the mantra of ‘nothing about us, without us’ is a brilliant way to approach Autism Rights. Autistic people should always be involved in designing Autistic supports, accommodations, adjustments. This is simply common sense.
However, there is a small section of the AAV community that I have witnessed being very forceful and, in my opinion, aggressive in stating their position. In my opinion, over-zealously wanting to take on parents of Autistic people as the enemy. Parents then are becoming defensive, knowing they have so far been their child’s biggest advocate. Always acting with the best interests of their child at heart. Feeling the need to defend oneself, puts up a barrier to learning, to progress.
It saddens me, when I see this becoming a war, a fight. No one wins, everyone has something to lose when we should be focused on gaining, gaining rights and equality for Autistic people – it feels counter productive that there is fighting, when end goal is ultimately the same! There should be no room for egos being caressed on either side.
Now, it is always important to remember in interactions, that many Autistic people are blunt in their communication and that should always be factored into dialogue and exchanges by neurotypicals, to ensure be don’t allow our feathers to be ruffled when really it’s just a communication style difference. Neurotypicals need to cop on and not take this personally. But bluntness is very different to aggression or abusive behaviour and I’m sorry to say, I have witnessed this this month.
I measure it by how this happens in my own home. Often my son asks me to leave his room:
Politely “Mum, please can I have my privacy.” – The manners I hope for.
Bluntly “Mum, leave my room now, I don’t want you here” – Not rude, just direct and part of his communication style that I accept and do not redirect.
Abusively – “Mum, get the fuck out of my room now! How dare you be here.” Never acceptable, because he knows it is rude, offensive and he knows it’s never ok to speak to me or anyone in that way.
Being Autistic does not exempt people from having an agenda or from being in some ways angry and at times offensive. Exactly like neurotypicals! A gentle voice supporting me Transatlantically, helped me to understand why some of those AAV are so angry.
However, I do not feel, it excuses abusive behaviour. I have witnessed some people trying to hide it as part the blunt communication style of being Autistic, which is a complete misrepresentation and actually damages the Actually Autistic Community as a whole, as most Autistic people do not communicate aggressively.
Now, it’s very important to note that I have also seen offensive, rude retaliation from parts of the neurotypical community too, this is as I said is becoming a war for many people and it’s damaging.
Therapies and supports seem to be the topic that causes significant consternation and controversy. Many parents pushing for supports and therapies for their children, with many AAV stating that these therapies do not work and in fact are harmful, calling out parents as abusers. This is devastating for parents to hear.
Choosing to judge or berate the parents who have in the past used therapies that now seem very inappropriate, achieves nothing. Parents driven even directed to create the best opportunities for their child in the world we live in, not seeing their child as defective but wanting the best for their child by supporting their differences, aiming to reduce their struggles.
On examining the information I have seen, I can categorically say that I do not advocate for or support therapies that try to make the Autistic person become more like a neurotypical person for example, forcing eye contact, preventing stimming, or scripting conversations that really mean nothing to the Autistic person just so they can conform to a societal standard of chit chat.
In terms of communication tools, I recognise and advocate for the many types of communication, so that voices can and must be heard without verbal speech. Wherever possible Augmentative and Alternative Communication (AAC) devices should definitely be available from a young age and never withheld, used conjunction with speech therapy and development. There shouldn’t be a fight about either/ or. Surely, we can aim for both?
With hindsight, with more information now available from AAV, we can look back and say maybe some therapies were misguided. We know there are other options, other viewpoints but evolution does not happen overnight. We need to be forgiving of mistakes that have been made with good intentions in mind. Of course, impact trumps intention, but recognising that is surely how we move forward.
I do feel it is however important to caveat that with absolute judgement and condemnation of the crazy, violent parents who have purposely harmed their children with, for example bleach therapy and other heinous ‘cures’. The parents who see their own child as less do deserve the wrath that they receive and they should not be allowed the privilege of keeping their children.
But for the parents who have tried to support their child in ways they thought would make their life easier, attempting to create choices and opportunities, not seeing their child as less but recognising a world that might treat them as less and have tried to protect them from that. Those parents do not deserve anyone’s wrath, they need compassion in finding their new direction in supporting their child collaboratively. All good parents want the best for their child, just sometimes we can get lost on what ‘best’ looks like or how we achieve it – that is true regardless of your child’s neurology being typical or diverse!
Neuro-Typtipcal supporters of Autistic people, are too trying to navigate our way around a world we don’t understand. We could go around in circles until the twelfth of never trying to make sense of what has gone on, but it’s more important to move forward, with what we have learnt.
I absolutely understand and respect the viewpoint of much of AAV community to feel aggrieved. But I have also encountered many people within that community who are not, some who see some benefits and positive intentions of some of the therapies they have gone through. Everyone’s experience is different.
I read an interesting article on www.neuroclastic.com (an excellent resource written by Autistic people), about many Autistic Voices effectively drowning out other Autistic Voices, which is again concerning. It is vital that one movement perceiving they possess the holy grail of ‘knowing what is right for Autistic people’ is not simply replaced by another.
I advocate for an environment of collaboration, an environment of ‘nothing about us, without us!’ Where the parents, carers and allies of the Actually Autistic community amplify the voices of the Autistic people in their lives. Who continue to aim for the best for and with the Autistic person in their lives, listening to and learning from the AAV community, most importantly, listening to the Autistic voice right in front of them.
** Trigger Warning** In the interests of honesty, and not being hypocritical, I must acknowledge, whilst I am committed to listening to AAV, I cannot always follow everything they say but it is, I believe, for good reason. Due to the nature of my son’s challenging behaviours, I have to make decisions about the type of therapies we have to pursue.
The therapy of ABA is not supported by a lot of the AAV community and as we embark with ABA therapy in our home, that has torn me apart this month, trying to settle on the right path to follow.
What has been my biggest learning from the AAV this month is, ‘what’ they feel is wrong with ABA. It has given me the direction I needed to research that fully with our therapist, to identify how this should be delivered, to engage my son fully in the process, and to establish a stringent review of the therapy at every step. Focusing on understanding the function and cause of the behaviour, supporting and re-directing. Understanding everyone plays a part in changing that behaviour. Making sure it is not harmful, even though it may not always be comfortable.
None of us has the right to speak for anyone else. But as a parent, I do have a duty to do what is best for my family, for my children and as part of that we have to recognise the impacts of any decisions we make on each of our children. I have one Autistic child, and two non-Autistic children. My son’s needs are regularly prioritised, my son’s needs take up much more of my time and energy than my daughters’.
I won’t lie or pretend that I don’t begrudge that sometimes. Not because I love my son any less, but because I want the opportunity to treat them equally, but for that to happen in society for my son, much more hard work and effort is needed. That isn’t his fault, it’s society’s!
This is where I go back to the most important fact I have realised throughout this journey of discovery; the most important AAV that I must listen to in all of the decisions we make, is Patrick’s. The Autistic person it actually impacts, the Autistic person sitting right in front of me.
Every person is different, every person deserves their own voice and as his mother I have to make sure that Patrick’s voice is heard, that he knows his voice matters and that he knows his voice is equal.
But, and we all hate the ‘but’! His sisters need their voices to be heard too, as we try to understand, reduce and resolve Patrick’s challenging behaviours, behaviours that have a massively negative impact on him and our family as a whole. As the responsible adult in this situation, I and my husband have to make the difficult decisions that may not be perfect, but are the best of our options to achieve our goal – to keep our family together. That is real life! It isn’t always ideal or perfect. I wish it were!
Back to the prayer I started with;
God grant me the serenity to accept the things I cannot change – I accept am not going to change opinions of the AAV who do not agree with the way I advocate. I hear and respect their viewpoint, I hope they can do the same for mine.
The courage to change the things I can – knowing that I have the power to drive supports for and with my son, that specifically suit his needs led by him for what is right for him, not led by pre-conceived rules on ‘right’ or ‘normal’. Changing society one day at a time.
The wisdom to know the difference – this one is a work in progress! This is where my own self-awareness of why and how I need to change my own mindset and the willingness to question previously fixed societal ideas come in. Recognising when my ego, my belief that I am right, is a barrier.
I started my blog this year reminding us all to ‘step out of line!’ I call for that again now more than ever. To drive forward an agenda of being truly aware of Autistic people in our world, accepting and advocating for their needs to achieve equality and equity in their human rights.
An Autistic person said to me this month “we need our own planet!” My response was; you have this planet – the rest of just need to get better at sharing it.
As we come out of this unprecedented crisis of Covid 19, with most of the world recognising the need for a new ‘normal’ let’s all consciously take action to make sure that version of ‘normal’ is flexible, all-encompassing and includes minority or diverse groups! Majority rule is not OK!