WAY OF LIFE
(a living document, evolving all of the time)
As each tribe has its own culture, inside the autistic culture, we have our own. We have written our evolving way of PDA Autistic being and living by creating pathways for others to connect and engage with us.
As in all cultures, my child and I were born and are beautiful and whole.
I am deeply grateful for my child, who lead the way for us, how to create our evolving autistic culture. I seek to connect with my child, meeting them where they are at and how they connect with others and myself. My child leads to me to great joy in the little things, humility, acceptance, insight, connection, fun and celebration of humanness.
AUTISM, A BEAUTIFUL MIND
We love, trust, revel and lead with our beautiful autistic minds, identities and cultures.
We strengthen another’s inner–connection, our good sense of self, autonomy, self-actualisation and self-determination through embracing one’s neurology.
We are learning how to KNOW, DIRECT and MASTER our individualised autistic areas of expertise, our way of being and our way of living.
We place well being, safety and self–care first; listening and trusting ourselves to create a healthy relationship with ourselves, relationships, social groups and environments and way of life.
KNOW OUR AUTISM – KNOW STRENGTHS
We see the best in others strengths, abilities and best qualities. We understand that everyone is valuable. When we think of ours, or another's autism, we first think of our beautiful minds attributes.
Our natural characteristics are nurtured, celebrated, enjoyed, strengthened and at the forefront creating foundations for my child's learning and future way of living. Subjects and specific outcomes first come as a result of this.
We have an innate ability to recognise other autistics, identifying and relating to the list below, which we understand vary for each autistic individual.
Natural study skill
Desire to know
Research and mastery
Self-motivated for purpose
Desire to help
Want to make things better
Thirsty for information
Search for answers and understanding
Collecting and gathering all information
Brings the bigger picture and all details all together
Creates many ideas
Eye for Detail:
Strong Centre of Attention:
Concentration and focus
Determined, unwavering commitment to a task
Observe, listen, learn approach
Fact and figures
Absorb and Retain Facts:
High level of long term memory
Retains detail recall
Seeks research and information
High level of skills and mastery
UNDERSTANDING OUR DIVERSE CULTURE
Many cultures place a high priority on family, socialising and their way of life. We do to yet perhaps in a different way.
Our beautiful minds drive us to independently know, investigate, research, analyse and master our expertise, skills or interesting subjects while navigating our extensive individual and families diverse needs causing tension trying to meet those needs before business, work, learning, social or any other engagement, including working with professionals and services.
Our autistic family is very complex in nature and meeting our diverse needs requires much time, focus, energy and finance.
My child can experience layered, sometimes invisible or non-speaking differences. I do my best to assist those differences and area of research or mastery while I am working with my own and other family members and friends complex neurologies. We have co-occurring conditions, trauma, panic-driven demands, sensory and cognitive processing to navigate, sometimes all at once. We can become overwhelmed, go blank, frazzled minded, shut-down and self-harm, tricky to navigate and can be a daily/nightly exhausting and stressful experience – this I believe is common.
For some of my friends and I, we are 24/7 Responsive Caregiving for our traumatised children with disabilities where there are differences in what we can or can’t do. Any time away from our children or with our children outside the home can be interrupted continuously to meet their needs to support them. There are times my child cannot have me leave their side of the home and if they are forced to do so is traumatising for us both. We require others to respect how we meet the needs of our difficulties and trauma. Others are to be extraordinarily flexible and respectful relieving us of any extra or unnecessary pressures, supporting what our children need and how we parent or care for them and ourselves. There is zero tolerance for our children's diverse needs and how they behave and what they require us to do to enable them upon what others are mistaken as 'bad parenting'.
Recovery from our trauma is our primary focus, and our successes can look very different from those who are non-traumatised, able and non-autistic. Try not to assume what they are or project your or your children's abilities or what is successful onto us.
High self-care and well being is paramount, our way of life. We will decline invitations, cancel at last minute, arrive late and leave early to attend to our needs. Anything can happen at any time. We operate best with ‘fluid plans’ and require others to be understanding and supportive of our decisions. If we are judged and not respected, we will know it and may not return.
WE TRUST WHAT WE SENSE
I support my child's intuition with people; they have always chosen kind humans. Whom we determine in our lives has a tremendous impact on our lives, positively or negatively. We are three times more likely to experience abuse and words can be tricky to find on the spot whereas our intuition is immediate and supremely accurate.
My child strongly senses and observes others emotions and intentions, even when their body language is masking those things.
If I am not okay – my child will not be okay. When I am stressed or overwhelmed, my child feels it, knows it and responds to it. It can affect everything, especially my child. Things can spiral out of control very quickly and last for days. It can take years to build my child’s trust, seconds to destroy it with an outburst, meltdown or mistake and years to rebuild again.
There is intense mindful work going behind the scenes at all times.
Every moment my friends and I are working on ourselves. Our families life can look different from everyone. Each family are finding their way of meeting their families diverse individual needs and ours comes before extended family, socialising or accommodating others.
We require others to assist us, and if they can’t, we move toward those who can because that is what we need.
GRIEF & LOSS
We have lost most connections with, or support from long-standing friendship circles, family, work, colleagues, school, professionals, services and other social, community groups. We have found others have not understood, adjusted well or supported us at all with the changes we have undergone to be in tune with our neurologies, embracing our autistic culture. The depth of grief and loss, rejection and judgement can weigh heavy in our hearts.
We are aware that parents can be 'flagged', investigated – if we do not do what some professionals tell us to do or if it takes us many professionals before finding the right one – they call 'professional shopping'.
Even though we have been very fortunate to have had and still have outstanding professionals to support us, we are extremely selective before introducing my child to professionals and services, protecting us from unnecessary negative experiences and risk my child removed from their home, safe house and family.
RESPECT OUR INDIVIDUAL EXPERIENCES
We seek being heard, understood and accepted to build trusting and respectful relationships. It is better to ask about our experiences and where we are at as no-one knows what our individual experiences have been.
We’re all individual.
What works for one child or person doesn’t mean it will work for another. What one person can do doesn’t mean another can do. And not to assume we haven’t tried or tried hard enough. Others can mistake their abilities or experience to be ours.
We are not superhuman and nor is my child.
For example, it was suggested for my child to take synthetic medication to help them sleep. We have generational addiction in my family, and I'm aware of our tendency to depend on substances. So, yes, we went years without sleeping until our service pup arrived. My child has slept very well since.
We follow our values and beliefs.
Many cultures engage in constant socialising – they thrive this way. We, however, this can be disconnecting for us, and thus, we seek meaningful connections over socialising that nurture our neurology.
Many people are energised and find connection through social gatherings or engagements, having a break from their daily routines and work. We like socialising too, more often prefer smaller groups and one-on-one interactions.
All interactions have value, not just the ones with loads of people.
It brings me great joy my child can strike up an engaging conversation with people in authority, civil law enforcement, medical professionals and services, soldiers, shop owners, inquiring about their role, facts and figures and things they know and have heard. Just like the way they talk to either myself, housemate, grandparents and other friends and family. Everyone is equal despite the work they do, their age or status.
LESS MEANS MORE
Our family can prefer more time working on our projects or just ‘being’ in our homes, over social gatherings or engagements. Too many people too often can become hard work for our brains and bodies (especially if our spoons are full, which they usually are if we have families or significant projects on the go). There’s much processing; regulating the sensory system before, during and after, unravelling the experience of the interaction afterwards, which can be exhausting.
Exhaustion and managing interruption are very disruptive to our being and what we need to do. School, for example, is intense socialising (constant interruptions), engaging with others all of the time for hours and days on end, not enough solitude time to recover and get on with our work becoming counterproductive and damaging. Less social interactions and connections with like-minded people allows our minds and lives to thrive.
Try to keep in mind, everyone is different and respecting how we connect and with whom, matters to us and is always our choice. It is essential to recognise this and work to accommodate our individuals with diverse needs or way of being as effective as possible as we do with our friends different family needs.
We are self-determined and thrive with no pressure, direct or indirect, respecting our boundaries and limitations.
Some of us do not have the emotional, mental or physical capacity or luxury for socialisation. We can seek solitude first, especially if we are full-time carers. Solitude is different from isolation. Solitude gives us space and time to be, get things done, think things through. Solitude can be the most productive and rejuvenating time. Something we love and need!
LET US SHARE OUR INTERPRETATIONS OF US
We know our autism in an autistic way rather than a pathologised, researched way or from an observer's point of view.
Within our wider autistic community, there are different cultures inside of it. Some autistic cultures beliefs include fixing, changing and curing autistic neurology and behaviour, that certain things ‘trigger’, heal and prevent autism being in us before, during or after we are born, eradicating neurologies like ours from the human race. Forcing us to fit – be normalised. Welcoming the very big engine driving intervention behavioural therapies, medical practices, services and programs that support this. These approaches became, has been and still is currently a highly accepted and practised engagement with autistic children and families, such as ours.
It is essential to know that my child experienced some of the above creating unmovable pain within us for the unbearable suffering I put my baby through. I didn’t know I was transferring my disconnection from my autism, trauma and societal fears, judgements and rejection, onto my child.
I do now.
I violated my child’s human rights thinking it was the right thing to do, out of despair, fearing my child being rejected by our friends, family and society or left behind and not succeed later on in life.
When working with traumatised children and parents like us, understanding this will give insight as to some of the reasons why we place trust upon our ourselves first as I knew deep down I knew I was traumatising my child in this way – I that was right all along, yet treated as the problem, the cause for the harmful approaches, environments, attitudes they were exposed to.
My intuition knew and still does know what some professionals, friends and family did or do not, no matter how firm their convictions may be. Again, they are either not living it or could be disconnected (unaware) from their own autistic neurology. It’s important to understand that we go to any length never to ‘go through that again’, be blamed or have my child's rights diminished or exposed to anything that hints a path back to where we're fortunate to survive.
Being compliant in many cultures can be seen as successful, respectful and a sign of good mental health. For example, if a child is doing what the adult instructs, this is successful behaviour and parenting.
My child challenges what they hear and will ask me 'why?' They will question to understand why we do what we do. My child is a deep thinker and justice seeker with free and independent thought, challenging norms, the status quo and the 'old ways'. We talk things through and my child has the freedom to disagree and see things differently from me and others.
Compliance works directly against my child's beautiful mind, overriding their connection to their neurological strengths and listening to their body. To do as one's told can expose them to learn how to be dominated and even subjected to abuse, not having the right to say 'no'. Preditors pray on those who can't say 'no', who are manipulatable. My personal experience informs me of this. My child is difficult to manipulate and this is nurtured.
I've learnt to embrace my child’s relentless courage and creative thought. Their neurology that directly works toward change, imagination and innovation. My child has brought an incredible intergenerational change in our lives.
WE ARE INDIVIDUALS
In different cultures, behaviours can mean different things, and many of ours communicate for reasons different from how they've been understood. In the past and still today many autistics are taught, pressured, educated, pathologised and socialised to internalise, mask and shut down our natural way of being and behaving.
We understand when we express our autism through our body language (not looking others in the eye) and behaviour (asking direct questions or stimming), can make others feel uncomfortable, defensive, annoyed, offended and overall disapproval of the way we are.
Sometimes when people have faced difficulties such as; resistance, aggression, silence, frankness, avoidance with one person they begin to assume their approach to resolving these difficulties are the same for a non-autistic human and expect the autistic human to respond in a certain way. It is vitally important to refrain from this presumption as it gets in the way of connection and effective, healthy, respectful engagement or interaction. Autistics can feel when you are harbouring feelings of judgment, criticism, control, domination, and being defensive and the result – a negative outcome for all.
To heal a long history of broken trust, causing intergenerational trauma, mental and chronic illness, co-occurring conditions and early death, we are to secure connection with ourselves, a healthy sense of self, identity and wellbeing to live a fulfilling and happy, long life.
Other cultures grow into themselves from when they are born, whereas we are growing out of our cultures, stripping bare all that we’ve known to make way for a culture that allows us to thrive. Learning late in life that I am autistic, I am relearning how to be my natural autistic self — unlearning decades of normalisation, years of non-autistic parenting and strategies that hid my natural person.
STRENGTHEN OUR FREEDOM FROM VIOLENCE
Autistic people often experience violations of their human rights, judgment, criticism, being controlled, dominated, not heard or misunderstood throughout their lives. These are some reasons (not all), where we are often ‘on edge’ when engaged with us.
Our anxiety is our bodies way of communicating we need to ‘return home’, reconnect with ourselves in some way that something either isn’t right and/or our bodies systems are overloaded with information (words, tactile, auditory etc).
Our bodies and behaviour communicate our autistic inner experience – it is to be understood not shut down. Professionals are to assist our voice – not to quiet them. It is important to openly and genuinely demonstrate how committed you are to being respectful of our differences, our voice. Don’t ‘say or do one thing and mean or do another’, we will detect it.
We are three times more likely to experience violence it’s vital my child can communicate ‘no’ and it is respected and strengthened. My child has the right to protect ourselves and their bodies from unwanted engagement including physical touch.
Professionals, therapies, programs and services are to respect all of our human rights. Commit yourself to genuine respect, and then make that commitment apparent.
Respect our 'no', our decisions
No touching or forcing physical engagement (shaking hands, hugging) without consent
When we are not speaking look for signs of non-consent (flinching, pulling/turning away)
Don’t use food or touch to reward behaviours you approve of
Do not see our behaviour of compliance as healthy, good or we're okay – we will be experiencing the complete opposite of both of those things
Do not talk over or rush us
All cultures have different relationships with food. When, what, how and with whom they eat. We are still progressing in our food culture, as we learn more about our bodies and as our bodies change over time. Listening to our bodies is a pathway to our connection with ourselves.
Both my child and I have different experiences and trickiness around food regarding taste, texture and sensations food can have upon our bodies or how our bodies sensitivities react to food. Our neurologies can become overly focussed with what's involved with it. My child's concerned being contaminated by it and their gustatory system make most foods unbearable to eat. I love food, can nearly eat everything and anything. My OCD brain turned it into disordered eating and body image many years ago for over a decade.
We apply compassion and understanding with trickiness we may have with food. We work best with what they can eat. There is no force, pressure or manipulating to eat foods our bodies can’t tolerate or when to eat. Sometimes we eat without company when we are overwhelmed and need to regulate.
It’s imperative to know we love our neurologies – we are not wishing to rid any part of ourselves as some people believe we can and should with changed diet. Know we don’t do eradication. The idea is deeply offensive and intolerable.
As will all people, Autistic people use words, verbal sounds and body language to communicate. For some, however, the ways of communicating can be different. Some things to consider when communicating with us. Some of these, of course, apply to all people
Let there be no assumptions
Respect our ways of communicating and regulating (verbal stims, rocking etc)
Our repetition is to be respected
Speak at a relaxed pace giving time to answer or respond later, as web thinkers there are thousands of thoughts and information to process
Talk on one subject at a time or help us too! lol
Our best is doing one thing at a time
Some people culturally avoid eye contact, we tend to look away to hear what it is said.
To understand others we will ask examining or frank questions
Refrain from pushing your ideas, your ways, your abilities onto us, we find this approach deeply offensive and disconnecting
Refrain from telling us what to do or pressure us in any way we will do the opposite to establish autonomy and self-determination
We all have ideas, yours isn’t always the best or right one for us
Be open-minded and be respectful to our ideas and solutions
If you use sarcasm or ambiguous language, not being direct, we might ask you what you mean – your honesty builds trust
Be mindful of the amount of activity and/or noise, this is the extra information (work) we are trying to process while conversing
Meet my child where we are at, and if they are struggling, leave them be to process
When my child is struggling (flight, fright – swearing and yelling, – freeze) they require compassionate, understanding – their mind needs help and assistance – pressure, fear tactics, manipulation disables my child more so by treating them as able when their mind is not
Ask and respect what we need, what we can or can't do
Ask how who we are, how we experience being autistic and not tell us what it is
Do not try to be an ‘expert’ on our autism or our autistic culture – be interested instead
Seek to understand and know more by asking questions rather than giving answers.
Refrain from running a conversation or learning with my child – don’t assume your way of conversing or learning will always be the best way – meet my child where they are at not where you think they should be at
Remember how we are treated is more important to us as than outcomes or achievements. So don’t push, pressure or rush us.
Hold onto your different values, beliefs and understandings without imposing them on us.
We may not say or gesture ‘hello’ and ‘goodbye’, we may greet and depart without an announcement or in a different way, and without touching (hugging, kissing, shaking hands). I'm tactile defensive and my child has a Contamination OCD brain.
We say ‘please’ or ‘thank you’, when we feel it or express gratitude in a different way, not when it's a hidden demand
Sees patterns, repetition
Outside the box thinking
Challenge opinions and social norms
Accepting of Others:
Everyone is equal
Questions for understanding
Senses others energies
Feels intentions of others
Seeing beyond what is
Seeks independence of choice
Seek connection first
Meaningful and real
Authentic and purposeful
Prefers real interactions
Black and offbeat
OUR FUTURE – IN OUR HANDS
Our Autistic life expectancies are between 34-55 yrs.
Suicide and heart disease are among the highest causes.
To live well today and change our future we place
OUR FUTURE – IN OUR HANDS
Our Autistic life expectancies are between 34-55 yrs.
Suicide and heart disease are among the highest causes.
To live well today and change our future we place
THE 'INVISIBLE AMY'
I provide the highest quality and specialised care for my beloved, with very little.
In 2020, our, 2.7 million Carers, wages of 77.9 billion dollars were not paid, at a grave cost, as Carers are among the "lowest levels of wellbeing of any group
"They [ Governments] must move beyond a focus on Gross Domestic Product and start to value what really matters, such as the millions of hours of unpaid care work done by women, which enables the wealthiest to prosper."
SOCIALISING OUR WAY BRILLIANTLY
"Online communication is equally valuable as
– Our Paediatrician
OUR LIMITATIONS RESPECT
& PROTECT US
The most compassionate people are the most boundaried