17 March 2022
Info dump alert!!!
The importance of identity and authenticity" asking...."What is my role as his parent to prepare my autistic son for being himself and how has he shown me to do things better??
First of all I need to start off by saying, by no means do I have my **it together.
I still have days were I feel lost, frustrated, isolated blah, blah, blah and have days were I have to go to bed and shut out the rest of the world.
It may sound like every days rosy and I've woken up one day and started blogging but I can assure you, this is not the case.
For context we are 14 years into my sons neurodivergent life and like many of you, have had to source nearly all of my information from the internet and have gone through the entire process unsupported.
I've had to leave my Job as a TA and another perspective job just recently to be able to provide Joe with what he needs.
I am on anxiety medication to help my panic attacks. This is not due to parenting an autistic child but everything outside of that.
So, what has changed over the years and how have I empowered myself to empower my son?
Nothing has really changed so to speak, but I feel like we are coming from a place of being informed, feeling stronger and confident in learning to advocate.
Hes finally in the right setting thats a big one!! being the difference between him being at home or going to a setting which celebrates neurodiversity.
I've learnt so many lessons during his and my formative years. I feel like we are both learning from each other all the time and this continues.
Have I made mistakes, "hell yes" Of course and I'm sure Ill make more!!
I wish id come across Nick Walkers and Evaleen Wheltons books earlier as it would have given me the tools needed to express my view point in a more compelling way. I've learnt to use language which empowers and validates.
I feel others in the past have mis judged me, calling me a know it all, but the more I think about it, this mind set says more about them and them not knowing me at all. They've not considered that its not a negative to be passionate, or to be a "maverick" and when I'm hyper focused I get very passionate about unjustified happenings and do not let things go.
I love this about myself as it helps me to enable Joe and to support others.
I have absolutely no ego what so ever. I could produce the most amazing invention and wouldn't be bothered if my name was attached or not. Meaning that the purpose or outcome is bigger than I,
Sailing our ship and inviting the right kind of people to help or alternatively dropping them off when they dont fall in line with our ethos has been and remains to be, the most important.
I cant tell you how important it is when you work with proffessionals that are singing from the same hymn sheet, although you probably know this right?
Its refreshing when someone enters your life that enables, and I dont mean to be dramatic, when those type of people leave or its time to leave their service/setting, Its like a bereavement for Joe and I.
I will be blogging about this at a later date.
Titled.... Attachment to proffessionals for all the right reasons.
Communicating to proffessionals can be quite triggering, taking practice and a certain amount of confidence whilst at the same time removing the fear you feel when you are talking to an authority figure such as Teachers, head teachers, sencos, la professionals ect by using the right kind of language to help others to think outside of their conditioned box. I think this relates to childhood memories of being at school and being told not to question figures of authority.
When I qualified as a TA, I didnt receive any training on neurodivergence. It was only through my own lived experiences that I was able to relate to the children I was supporting and really understanding what their parents were going through. Not "going through "bringing up a neurodivergent child but having to constantly evidence and persuade proffessionals to hear them. I was able to provide them with a heads up on what direction was best based on lived experince. I think they found this refreshing too.
I have worked with some amazing Teachers but there is also a lot of misinformation, research and darn old fashioned thinking about neurodivergent people including the assessment criteria to meet the threshold for a diagnosis which doesnt help proffessionals that dont know any better to separate fact from fiction.
"Autism awareness month"," light it up blue", blah, blah also unsettles me as the terminology is quite patronizing and full of puzzle pieces and why should people be aware for one month only ? What id like to see is all year round inclusivity.
Ok, I'm rambling...
In order for Joe to proudly identify as autistic, it is crucial that he learns how his mind/brain/body effects his central nervous sytem. This will give him the tools to identify all the amazing ways he can use his body to support regulation and for others to provide what he needs to help with regulation.
Historically, the usual sources of information that are commonly available to parents/carers, children and young people are...
Schools and all staff included.
LA Educational phycologists or Private
LA Proffessionals, Social workers, EHCP coordinators, SEND Parent carer Reps ,Carer Support service, Sendiass or similar
Health proffessionals, Health visitors, Nurses, Health care assistants, CAMHS, Clinical Phycologists, GP and various panels of proffessionals who represent a cross section of all services across Heath, Education and Social care who make decisions regarding children's lives.
All of the above in our experince are restricted due to budget restraints and bound in terms of how they can help us due to lack of commissioned services and other issues.
Independent children and young peoples Charities ran by neurodivergent people
Independant charities for neurodivergent adults, ran by neurodivergent adults
In the last five years I have noticed a flux of Independent neurodivergent led providers offering their services via, websites, Facebook groups, ect... Who have provided parents, carers, children and young people with an alternative, in the form of valuable, empowering, validating language. offering courses,
( Not parenting course) seminars, representation, Education, including working with Schools to bridge the gap.
I have included these organisation under Useful Links.
These organisations are extremely reliable, all of the content comes from lived experience and places the family at the centre.
This, for many parents has been an absolute game changer regarding sourcing information that originally would not be provided.
I'm sure these sources and influx of empowerment are causing Local Authorities to panic over there already tightly restricted budgets.
Ipsea is a prime example of an independent service providing parents free information in terms of EHCPs(Educational, Health and care plans in particular and supporting parents through the legal processes. Please find the link below.
So, Without going into the age old argument around Diagnose or to not Diagnose too much, ill start with before Diagnosis, This is relevant in terms of what I'm sharing with you.
Tbh I'm not really sure how to write about this, because its quite painful.
He was emotionally and physically lost. Trauma engulfed.
Joe was drowning in a world he didnt understand.
I knew he was autistic, but trying to find someone else to guide me, support me, in starting the diagnostic process was impossible as School just "didnt see it".
He didnt throw chairs across the room, or shout or have melt downs at school. He was cute and Quirky and not an "issue" for the school. So not a problem for school meant a massive barrier for us. I had to take complete control and start driving our ship.
This resulted in him not wanting to leave my side and me having to leave my job. This can sometimes be diagnosed by proffessionals as an "attachment disorder" and may talk about this "disorder" being "unhealthy".
Yes, Joe was attached and still is attached to me. For nearly all of his life I am the only person that truly understands and validates him, I am his constant, he can be his authentic self with me, removing his mask when he comes home and releases all of his built up energy from the days expectations.
This attachment to me is due to trauma and primary school and supporting services not being proactive and nothing to do with him being neurodivergent. It is a consequence.
Trauma and attachment, identity, standing up for his self, preparation for adulthood has been my main focus ever since Joe left primary mainstream education in terms of recovery, 2 and half years ago. Just to clarify it has always been my focus but I've also like many parents had a massive system to learn how to communicate with which is the equivalent of having a full time job.
We shouldn't really talk about Joes Trauma and not mention my own as they are one and the same.
When hes struggling, so am I, when hes in pain, so am I, if he isn't included in the community, neither am I. If hes isolated, so am I.
This has led to panic attacks.
I may come across as Bubbly Jenny but this is my mask hiding my pain and frustration with the world.
I also struggle to talk to people about anything other than our way of life and when I do, I can see them glaze over not really knowing what to say.
Well, l what can they say when they too, have a really old fashioned view of neurodivergence and when they do talk to me about it, the narrative is triggering for me.
when people do ask me how I am, I reply with... Fine thanks, you??. They dont really want to know how I am, if I were to go in to all the ins and outs they'd be stood there a week later regretting the question!!.lol So I've started to avoid all interactions with people that just dont get it. Its too exhausting for me.
Part of my parental role is like any other parents that give a dam.
To help him to understand what feeling safe looks and feels like.
Helping him to love himself and boy, is he easy to love!!
Making sure hes given the best opportunities for his own personal potential based on what hes interested/passionate about.
To be able to give him the tools to say when something doesnt feel right and then do something about it. Its ok to say NO
Support him through relationships
Making sure above all else, that he is HEALTHY
What does HEALTHY mean?
Most people would assume that healthy means physical health, sleep, warmth, shelter, hygiene, diet, annual gp check up, exercise and to a point it does. But HEALTH covers much more than the above.
To be healthy is to be happy, to be happy is to be human. This beautiful sentence was first introduced to me by @janetwillicot.
What do we need as a species to be happy.
I feel this is what binds the human race.
Happiness and how we all strive to be ourselves. In fact being ourselves is something which is usually discussed in schools through phse.
Gender identity, sexual identity, cultural, Sex education, consent, friendships, relationships, However its based on a neuronormative model that doesnt include neuro divergence.
For example. Before starting "specialist" provision Joe hadn't experienced any validating life experinces with peers beyond home. There wasn't and still isnt any autistic led get togethers with validating language that exists in his community for his age group.
In year 5 and 6 they covered sex education dictated by a mainstream curriculum. However, most of it was completely inappropriate for joe and totally unrelatable. Joe didnt really have any true friends, never mind knowing what a sexual relationship looked like. It was like jumping from A straight to Z and then realising that the whole alphabet was in the wrong language.
Also most of his peers were attending all of the usual activities in the community, forming relationships with others, learning life skills which were appropriate for them. Lessons and experiences which help shape the human mind. Joe had learnt the hard way that these experinces were damaging to him and taught him time after time that he did not belong. Id like to pause here and side track a little....
Joe wants to make friends.
Joe wants to go to school
Joe wants to be part of the community
Joe wants a family one day
Joe wants to be employed one day.
But all of the above is only an option to him if he "behaves" in a way that others can relate to, making their interactions with him more comfortable for them. For him to change, for him to adapt, for him to mask, for him to "learn how to socialise" they way they think socialisation should look based on how other people are able to socialise.
The impact of this is that he has learnt from a very early age not to keep torturing him self and to stay at home by avoiding any further trauma or triggering situations....... wouldnt you?
The ironic thing is, a lot of literature which talks about "autisitc traits" will state that autistic people are "ridged thinkers" and struggle with empathy, but when you actually look at all of the neurodivergent children and adults in the workplace that are accommodating Neurotypical peoples expectations and having to act and behave in a way which is deemed "appropriate," its certainly not autistics that struggle with empathy and ridged thinking!!
Apologies, I've digressed..........again!!
So how are we teaching our neurodivergent children about their identity?
And why do we only encourage one subtype of child to be their selves but not neurodivergent children and who decided that one way was the only best way, measuring all children against one model of being.?
As Autistic scholar Nick Walker explains,
"From earliest childhood, people are trained and pressured into the preformance of "heteronormativity"-the preformance of a restricted binary heterosexual masculine or feminine gender role assigned to them at birth based on the shape of their genitalia. By the same token, people are trained and pressured from the earliest childhood into the preformance of neuronormativity- the preformance of the local dominant cultures current prevailing images of how a so called "normal" person with a so called "normal" mind thinks, looks and behaves" end of text.
Hello, its the 21st century!! Its no wonder we have a mental health crisis in this country(UK)
Which brings us nicely back on to the subject of what it means to be healthy .
It would be difficult to feel happy and therefore healthy without feeling safe.
Feeling safe, to some might mean one thing but in actual fact it could mean many things.
When Joe has to spend time with someone he feels does not understand him as an autistic human being then this will effect the narrative they use, the body language, tone of voice, the responce, the approach and also their ability to step out of their brain/mind and enter into his. He is very Intune with peoples
state of being. Does that make sense?
In other words he can feel when someone is faking it or has alternative motives that dont fall in line with his authenticity. Even if their intentions are good, they can be at times counter productive.
This is why varoise "befrienders" have not worked in the past
Hed be a great investigator due to his insight.
This is were him and I are similar. We are both empaths.
To laugh, to feel loved, to be loved, to love others, socially(And I dont mean in the neuronormative sense), romantically, sexually if not asexual, to feel part of the community in a meaningful way. To feel respected, validated, to know yourself and be your self. To feel fulfilled. To be Healthy.....
So if we look at what needs to happen in order for children and young people who will eventually become adults to experience all of the above, it really makes you realise that once you start removing components from the above list, then you can understand why your child is not healthy, having absolutely nothing to do with their neurodivergence but more to do with other external factors. Not ENABLING NEURODIVERGENTS TO BE HEALTHY is not providing what we all SHOULD and MUST(legal terms) receive as part of our human rights set out in law. The equality act being one example.
The benifits of Joe receiving his Diagnosis was...
Joe said.... Yes I knew it, I'm going to go into school tomorrow and telling everybody!!
He felt empowered, I felt empowered.
I immediately started to source information from the autistic community.
Certain National autistic organisations didnt feel right and the language was quite shocking so I avoided those and stuck to the ones we identified with. I've included these in the useful links section.
My first priority was to make some drastic changes at home, not that I wasn't enabling him anyway but I stopped questioning myself, including educating family members on their interactions with Joe and the language they use.
Ill be blogging about this later.
I also evidenced the need for Joe to have a sensory integrated Occupational assessment. Absolutely crucial in terms of him understanding his body/mind and his central nervous sytem and a huge part of his identity.
I also started to reframe how Joseph felt about autism. The only source of information available to him at the time came from non neurodivergent led organisations, leaflets from the NHS, media, and his peers and other proffessionals. He was actually surrounded by a lot of misinformation based on one piece of research conducted by one man years and years ago based on white males. The DSM5 which hasn't been undated in years and is totally constructed by non neurodivergent people is still used to diagnose and uses the same diagnostic criteria on girls.
So I spent a lot of my time and continue to do so to re educate him and others, around validating language and to encourage him to self advocate as much as possible to prepare him for when I am no longer here Including the narrative in which he is described in his EHCP.
Ill be blogging about this too
Self advocacy is not easy though. It will take years for me to prepare him. It only works when the person hes advocating to has reacted in a validating way. When children do self advocate I feel it should be received with a great big thankyou for telling me!! Even if the receiver does not agree. You dont need to agree. You just need to listen, act, validate and thank them for being brave enough to be authentic. This reinforces that children can trust other people and that they are safe to share their true feelings. This is a life skill.
In fact this, as a life skill should be included in the curriculum. Now that really would be worth teaching. This is what children really need as they prepare for adult hood and the more points, tokens, rewards and "positive behaviour" plans are used as a way to persuade children to conform, will only further delay the need for children to listen to what their bodies are telling them because they are trying hard to please others.
Joe is a massive pleaser. He has pleased others for most of his life at the expense of his own needs and the needs of his central nervous sytem. "doing the right thing" becomes more important and has caused a great deal of trauma.
children are being rewarded and measured by a mainstream curriculam with an odd sense of what "good behaviour" looks like. Attend a full time schedule, complete homework on an out dated subject that they may never look at again once leaving education. meeting neurotypical outcomes written for neurodivergent children.
I guess all of the above continues because its easier to deliver. Neuronormative people can relate to it, understand it and live by it but how successful is this really and who benifits from it?
We have a lot of unlearning to do.
All experiences and time spent with adults and peers will shape the people they will become as experiences shape or influence mind/brain, also influences how children view themselves. They are viewing themselves through the lens of adults and all who interact with them.
Teachers.... What are we really teaching?
How talking to authority figures can be triggering
Talking about people who really listen and then act and the impact, short and long term.
children who spend time with certain adults for a short time, this time is pivotal. What skills are you passing on?
How valuable are the skills we are passing on what does this feel like for the child? How do we measure?
Hope you enjoy the read.
Jenny and Joe x