Neurodiversity affirming language is a key component to neurodivergent identity.
Feeling loved and valued is one of the key components to feeling happy and healthy.
The family and extended family play a really important part in this.
Part of my role includes educating my family on how Joe would like to be addressed as an autistic person.
We are very fortunate to have a loving supportive family. Before Joe came along my family hadn't had the pleasure of knowingly being around an autistic relative before, so part of my role has been trying to explain and educate, helping Joe to let his family know what works for him and what does not work, for example the dreaded Christmas and other seasonal obligations. When my Mum read this sentence she was saddened by the word "dreaded" but this is a typical example of her seeing Christmas from her perspective and not ours. When I explained she understood completely.
We have learnt over the years that dragging ourselves to different family members houses does not work and is just one big fat stress. Again their experiences and perspectives are not the same as ours. So we lay down the terms. People come to us so Joe can retreat to his bedroom as and when he wants.
before I start going off track Ill get back to it....
The old age argument of Nature verses Nurture and the social model verses medical model of disability, I feel has influenced how we all view and live along side other human beings.
As Joes mum and as a neurodivergent human myself, we are literally the same in our thinking and how we perceive the world. We are empaths by nature and this means we are extremely sensitive of how each other are feeling and reacting to the world around us. What others are blind to, I can see clear as day.
We can also get on each others nerves too like most families. It isnt always rosy in our weird and wonderful crazy garden of quirks and queerness!!
However, this is our life and our lived experience. It might not be the case for others.
Just because you are related doesnt mean you automatically understand your child's experinces.
If you are looking to understand and learn from the neurodivergent community promoting diversity affirming language under the neurodiversity paradigm then a good place to start is....
Please see previous blog A review of Nick Walkers Book. 9 minute read. (celebratingtheneurodiversityparadigm.com)
Be the change that you want to see for your child and educate your family members how you'd like them to love your child through validating and empowering language. Neurodivergent people should be taken seriously and have autonomy over their own lives including the life they live within their own family.
Use these interactions with family members as a rehearsal for wider experinces with other people that are not family.
Use it as an opportunity to enable your child to tell your family members what they are not comfortable with. Its ok to say "No,"! I'm not happy or comfortable with that," In fact teaching your children the word "No" will be crucial. There will be lots of times where adults will want to try and change your child's neurodivergent identity.
Encourage your family to find out about neurodivergent culture. If your child is surrounded by adults, siblings, cousins and so on who are using neurodiversity affirming language then this will be the foundation to your child's sense of self and how they value their identity.
I love my family with all my heart but they have been known to use triggering language as they haven't been shown an alternative.
As Autisitc Scholar, Nick Walker explains "If we know better, we do better"
I want to avoid pathologizing language as much as possible as Joe is impressionable. Every time someone uses a pathologizing word, which enforces the medical model of disability and the pathology paradigm, it floats into the air and seeps into his consciousness.
Pathologizing language such as....
What's wrong with him?
Thats not normal behaviour!
Thats not acceptable behaviour
I wouldnt put up with that!
He has issues!
Id nip that behaviour in the bud!
I came across a fantastic piece of writting on Facebook Written by Emma Marsh and Melanie Heyworth. Neurodiversity-affirming language: A letter to your family, friends and support network | Reframing Autism
This letter invites people to use Neurodiversity affirming language and explains why this is vital to Autisitc identity. Reframing Autism have provided the narrative for anyone to use and share.
In addition, another similar resource is a letter to provide to children’s networks (teachers, therapists, family, etc) on neurodiversity-affirming language
Please feel free to share this with anyone you feel needs to here it.
Shockingly, I've only just come across this neurodivergent led organisation and I'm loving the content. Hello, 21st Century!!!They're right up our street! well, not literally.
Lets talk cousins and siblings
Cousins and siblings are no different to any other children. They are influenced by the world around them including the mind set of adults and role models to which they look up to.
Adults who are proactive and want children to be part of an evolving society who embrace neurodiversity, in that, there is no such thing as "normal" and all brains are biologically unique, will provide this foundation of information, opening up all sorts of diverse thinking creating new pathways of interactions which include minority groups that are ordinarily marginalised and excluded from being valued by some peers.
It is also important to add that I am not naïve. Joes Cousins will not always be as accessible to him, as they move on with their lives. University, relationships, employment ect.... and Joe will find those transitions really difficult. In fact its already happening as he asks me every weekend and half term which cousin can come to play with him. We are running out of options.
Half terms are the worse.
Over to Joe....
I bloody love my family. Every night when I go to bed I tell them all how much I bloody love them and how amazing they are on our Family chat.
I call my cousins Honey number 1, 2 and 3 on my Dads side. Ill Say to Lacey, "Hi Honey number 1,"then Charlie will say. Hey. I thought I was Honey Number 1!
Then when Erin is home from Uni Ill tell her she's my actual Honey number 1... Hee hee.
I get very lonely sometimes. I want to try new things but I cant find the right things to do for me where I live.
We used to have a Caravan at Nettleton but my Grandma sold it. We have a Chalet now on the Fitties called Vitamin Sea. I love all my cousins and they love me. I like my family to play Languages with me. I'm the Teacher and they are the students. I want to be Language teacher when I'm older.
My other cousins on my Mums side are called Erin, Isabelle, Bethany, William and Josh. My Aunty Charlotte has just has a baby called Noah. I call him our miracle baby because he nearly died. I wish they could play with me very day. Well not every day.
Back to Jenny I'm afraid...
Joes relationships with his wider family have fundamentally helped shape his brain/mind and how he views hiself and how he feels within his own family. If children/young people/adults are not enabled to be themselves with the people who are meant to cherish them then how will neurodivergent humans know what it is to feel loved and valued in the wider community and how will they be shown how to value themselves?
This is why the narrative we use in the broader sense when talking about neurodivergence is essential. Its not a perspective. Its a biological fact that neurodivergent brains/minds/bodies are neurologically different to the neuromajority. This does not mean there is something wrong with that brain/mind body and therefore should not be described as such.
Our blogs will hopefully inspire people to think about how we all interact with individual cultures and to recognise how essential these first relationships are, to help to build confidence and sense of self.
Its frustrating that so many people are still in the mind set of expecting the child to change their identity by not adapting environments and experinces to be accessible for neurodivergent children and young people.
I am 47 years old and identify as a neurodivergent person. I've not had the privileged of a diagnosis and although I've started this process I know I'm in for a long wait. When speaking to my Mum about this, I'm not sure she felt very comfortable with the idea, having felt she'd let me down by not recognising this sooner. However, I used to be a dancer from the age of 4 to17 years old and looking back, I realised this suited my personality and the need for movement. Maybe this passion of mine enabled me to mask my authenticity at the time. I was also the eldest of four girls. She had a lot on her plate. Like a lot of people, had little knowledge on neurodivergence and relies on me and Joe to educate her.
I wonder how many other girls/women or are being diagnosed late and how many of these people are part of the LGBTQIA community?
I wonder how many women have masked most of their lives and not told anyone about their neurodivergence feeling the heavy hand of judgement pinning them down. Freedom to be ourselves is not a given but it should be none the less.
Sorry, I've digressed! but not really?
One of the biggest learning curves our family has had to get their heads around is the autisitc culture and the difference in communication from the way neurotypicals communicate.
Despite some of the information written about autistic people, Joe has a fantastic sense of humour, in fact hes one of the funniest people I know. I think hes hilarious. When we laugh, we laugh hard. Proper belly laughs. But not every one gets it. I dont get why personally, but thats the joy of neurodiversity I guess! He has to be in the mood though and when he isnt sometimes our family can read him in the wrong way and still expect him to get the joke.
Neurotypicals and Neurodivergents form of communication can be completely at odds with each other and this is no different for our family. Making plans for a family day out for example has to be methodically planned and the day may look and feel one way for them but completely different for us. Last minute change of plans are our worst nightmare. However, our family will do everything they can to ensure we have an authentic day out. Asking, "what is easier for you."?
This helps massively. The element of control.
I really suffer with anxiety and is mostly elevated when I cant go home when I want or anything really which means I am not in control. Which is a right pain as this can be triggering for Joe too. We often trigger each other. I guess thats the case with most families actually.
It is bitter sweet watching Joes Cousins grow up and grab life, especially as they grow older. Joes future is not the same as theirs in terms of opportunities. Joes opportunities are not going to match theirs. Even though I'm trying to prepare him for adulthood, I know there is nothing really out there for him in our little town, I wish had the money to create a truly neurodiverse community. Everyone treated equally. A NEUROCOSMOPOLITANISM society in the way Queer autisitc scholor Nick walker describes in her book. https://neuroqueer.com/"Neuroqueer Heresies collects a decade’s worth of my writings on the neurodiversity paradigm, autism, and neuroqueering, along with new commentary and new material on Neuroqueer Theory".
So I'm going to bring this blog to a close now which is something I struggle with in terms of stopping!!
If you've managed to read through to the end of our #blog.THANKYOU!!
Love Joe and Jen xx