Get NDIS they said. It’ll help they said

So NDIS broke me. But it was just the proverbial straw. That straw fell off a camel that had too many humps and thus could carry a lot of straw. Let me explain to you what the accumulation of trauma does to somebody. But first let me list that trauma for you. Why? You really need to understand what collateral damage does to a person and you may wonder what it’s doing to you.

Born autistic 1969

Sexually abused approximately 1973

Separation anxiety which included bed wetting, people pleasing, utter confusion around societal norms until I was 13 for the bed wetting but the rest has been my whole life.

Marrying a man I loved too young who I should have just had a relationship with.

Advocating for my autistic child from the age of two. He’s 18 now and I’m still advocating.

Selling our house because there was no funding, no HCWA, and we could not sustain even the gentle therapy we chose. We’re not fans of ABA.

Living a fairly isolated life due to lack of inclusion and acceptance within the school community.

Supporting my child through dreadful bullying and trying to have it stopped. Then trying to have the school take accountability. Then deciding I had to tear down walls and rebuild them.

Always knowing I am also different without the clarity of understanding why.

Having a massive mental health breakdown in 2011 which has seen me hospitalized dozens of times over the last nine years. During this time I was openly gossiped about in quite nasty ways by people who were connected with me. I saw it and I was suicidal. (I quickly saw through their nasty selves thankfully) I was over medicated and I had unnecessary and invasive traumatic electro convulsive therapy. This meant a future with a permanent short term memory impairment which I hate and get so embarrassed about.

My husband getting diagnosed with cancer and having an operation to remove it.

Continuing to advocate about bullying in schools while being treated badly by some who should no better and ignored by others with the power to commence change.

Throughout my life things happened I could never understand. I would have to have blow by blow debriefing with my Mum or husband yet still never understand.

Started a business with my then 15 year old autistic son which gained international press and while I could use that to advocate about better employment options for autistic people, I realised the limelight was not for me. Managing his business for two years put me in long term burnout.

Receiving an autism and ADHD diagnosis at 50 was great but it’s like breaking a bone to reset it. I had to learn and am still learning how to drop my mask and be the authentic me I want to be.

NDIS last year was stressful but successful for my son. The second plan has been a nightmare. I can’t really say that NDIS broke me but it was like that dam with too many holes. It collapsed and I faced a tsunami. I’m in a state of collapse.

I spent all of 2020 preparing to give a private submission with The Disability Royal Commission.

Let’s not forget the uncertainty of CoVid. Do you know how difficult uncertainty is for some autistic people.

We moved house and I’m still overwhelmed with things to unpack. We had a lot work done on the house which was an invasion of my senses and I loathe dealing with strangers. They are polite and nice but it’s taken me out of the discomfort zone (because I’m not yet in a comfort zone) even further.

The building inspection report missed a heap of stuff. Can’t even begin to talk about that.

I’m not having the chance to be creative and I am wilting from this.

I can barely string words together at the moment. Pretty sure the time has passed to lodge the appeal with Administrative Appeals Tribunal. I can’t stomach it but I also have nothing left to give.

I constantly feel guilty about my inability to do much and feel like I’m letting everyone down. Anyway my point is that before most people get to the point of beginning the NDIS pathway they are exhausted. They might be fragile and lacking resilience and resilience is the very thing you need in spades.

The accumulation of trauma means I live with PTSD. This means I am some times triggered. It means my threshold for dealing with things is very high. I sit in a state of high anxiety. What I am no is too sensitive. There’s no such thing. What I do not want is pity. I am not whining. I am informing. I continue to bang on about mental illness so that we can banish that stigma forever. Do you know my kids can talk to me about anything. I have always been open and honest with them. Yes I measured my words when they were younger but I was always honest.

My kids may not tell me everything. They’re entitled to a level of privacy but they come to me when they need help. They know they’re safe to. My kids think nothing of visiting me in Belmont Hospital. It’s all very typical. Let’s spread the word. It’s all very typical.

For Want of a Nail

If you are not familiar with this term I will share the whole proverb for you.

For want of a nail the shoe was lost.

For want of a shoe the horse was lost.

For want of a horse the rider was lost.

For want of a rider the message was lost.

For want of a message the battle was lost.

For want of a battle the kingdom was lost.

And all for the want of a horseshoe nail.

This proverb should hang in every single NDIA and NDIS office in sight of every staff member. Sometimes small but meaningful accommodations can save a lot of money and energy as you navigate the path of the necessary supports. I am not talking about medical cures and processes, but rather, alignment with the values and goals of the person requiring NDIS funding.

I am not even going to write about the medical model of disability because in most cases we all strive for recognition of the social model of disability. This model calls on the way society at large must adapt and make reasonable accommodations for a disabled person to have access that is inclusive, authentic and meaningful. This model is about removing barriers that prevent disabled people from pursuing a typical life with the added fundamental right of equality and I will say again, inclusion.

I am not a voice for all people with disabilities and don’t dare to presume what the meeting of simple needs in the early stages of a person’s life or disability would mean. Remember not all people are born with a disability some acquire it through accident, illness or a late diagnosis.

I am an autistic person with ADHD and also have a co-existing mental illness. That mental illness diagnosis is depression, anxiety and PTSD. Anxiety is a typical co-existing condition with neurodivergent people. PTSD unfortunately is due to some early childhood trauma (not of my parents actions), and then there is depression. I am going to address the elephant in the room immediately. I believe my depression is a direct result of a late autism diagnosis. Of not understanding why I felt different but not in a good way. A lifetime of masking and trying to fit in. Autistic females are more adept at fitting in usually.

Nine years ago, my depression was so deep and my life was in danger. At this point there was absolutely no curious investigation into my neurotype and the go to treatment was ECT (electro convulsive therapy) or as most people know it – shock treatment. This treatment stole memories from me and impacted my self-confidence for a very long time. It successfully jolted my brain out of depression though. I used to be grateful. Now I am fucking angry. I despair at the loss of memories. I despair at the most likely unnecessary invasive treatment. I despair that a very experienced psychiatrist was not at all familiar with the DSM-V and how autism in females typically present. Despite knowing, my son is autistic.

If the horseshoe nail for me had been an earlier diagnosis, I thoroughly believe I would have avoided ECT and many, many admissions in a psychiatric hospital. I would have connected earlier with my fellow neurodivergent tribe (who I love dearly) and the pain and suffering I endured due to confusion, misunderstandings and burnout could have been avoided. This does fill me with rage. I have read so many stories of women my age finally receiving an autism diagnosis. We all have similar reactions. We feel a level of grief and a-ha moments. I know I have returned to incidents throughout my life that are now so much easier to understand, the veil of confusion not lifted but understood.

Can I get an NDIS plan? Most likely! Will I? I doubt it! You see with my executive disfunction I struggle to manage the NDIS plan for my son. His first plan was great and aligned with his goals and was a complete success. This year the NDIS have not considered his goals and we are going through the stressful process of appealing. The devastation of his underfunded second plan knocked the wind from my sails and created such a high level of anxiety and burnout that I was admitted in a private psychiatric hospital for two weeks. All I could think about was how small the NDIS had made his life and of the frequency of future appeals at the end of each plan.

The NDIA must surely train their staff to have foresight and recognise the dreams of their clientele. The need for continuity and the recognition that goals that include self employment should be heartily supported. A self employed or employed NDIS participant is a wonderful goal for each individual. These goals are written by each participant to assist with making their lives meaningful and add value to their life and possibly their family or their community. This is the big picture stuff. This is the Kingdom we don’t want to lose sight of, all because of a horseshoe nail.

Self Isolation

I hear people are struggling with self isolation. Yes it’s going to be tough for many and I worry about the mental health of our nation. I worry about the people who have lost their jobs. Who are feeling desperate.

Welcome to my world. This is how it has been for a large amount of my life. As a disabled person who parents a disabled person we are accustomed to isolation. The only difference is, we did not choose it. It was not due to a directive of our government. It was due to people’s fear of difference.

Since this started I have made an effort to reach out to people to check on them. I started a street pantry. I email and text funny memes to family and friends. Because I know too well how it feels. Being accustomed to isolation does not make things easier for me with the covid19 crisis. My anxiety is creeping up. I’m worried about my parents. I see people assaulting the elderly over toilet paper. This is nuts. We need to be supporting our most vulnerable not attacking them.

So I decided to write some words down in a circle. I’ve been learning about physically stepping into a circle that I visualize in moments of joy. It helps you create an anchor. Something to keep you grounded when facing difficult times.

Please use my words to help you create your own anchor.

Step into the circle

I wish you all well. Please stay at home. Read a book. Play some music. Write a journal. Bake something. Plant something. Write a letter to a loved one and post it. Sing out loud. Dance around. Start a tag you’re it with friends by sending funny or beautiful memes. And tell me if you can think of any other great activities.

When my heart is bursting

My daughter is truly my daughter. I think she is a better version of me in fact. At 14 she was already a better writer. She’s passionate and feisty. When she realizes what her purpose in life is and redirects her feistiness, she will be a force to reckon with. 

She fights tooth and nail to be her own person. I know she loves that she is the spitting image of me but in other ways she defiantly demands centre stage. I love that. More satisfying is that mostly she fails at convincing me. She may convince others but she is my daughter. I see her and know her because she is me just better. 

She is a Daddy’s girl but when it comes to confiding in someone, I’m her person. She brings the best and the worst of herself to me. I know she trusts me to expose this vulnerability to me. I’m her safe harbour. She knows there is nothing she can’t tell me that will sway my utter adoration and love for her. 

She teases me with my taste in music. Dad apparently has a much better taste in music. Yeah yeah yeah. We all know my taste in music is sublime and also my general knowledge around music is far superior than his. That’s a fact my husband would agree with. 

Last night my daughter was showering and listening to her current playlist. I heard Mondo Rock “State of the Heart”. I play this in the car every single day. My heart filled with pleasure. She loves a song I love. A song I played everyday. A song that stirs something in my heart and she loves it. Next up was David Gray “Destroyer”. Now this song is another song that I play every single day. It’s on a shortlist for my funeral song. This was never a hit and I know emphatically she could only have heard this song driving around with me. I was feeling so much joy knowing I’d shared something I love so dearly with my daughter. And she had scooped it up and fallen in love with it too. 

It was proof she loved and endorsed the music I love. I know she loves The Killers but they’re a band her Dad loves and also still on high rotation in many places. 

I must say that for the rest of her shower I did not recognise her music. She is also a big Harry Styles fan too. Oh well I have Bucks Fizz on my Spotify playlist. 

We all want our children to stride through life doing what is best for them but when you continue to catch glimpses of yourself in them it is true joy. A reminder of your own youth and the blank slate your future offered you. A reminder that there was a time when life was simply about the song you were listening to or the new music you were discovering. 

My daughter recently bought tickets to see a band. She’s been to stadium concerts with me or her Dad but this is the first time she bought tickets online with her money. I’ve never heard of the band but I was seeing live music from the age of 16. My parents had never heard of The Riptides or The Funaddicts or the many other alternative bands I saw. A rite of passage for all our teenagers. 

I find simple happiness knowing her path is similar to mine. I know it will be very different also. I know and trust that when she fails, she will falter and then rise up and continue on her way. I am giving her that room to fail so she can learn and develop resilience.

If you hear your child playing music you know you exposed them to, enjoy! It’s a lovely experience.

Television is not a social story

Hands in the air if your formative years were shaped by sitcoms and dramas that helped you navigate life in a world that at times made no sense. I personally would like to thank the following shows:

The Brady Bunch

Scooby Doo (no not really but I loved it)

Beverly Hills 90210

Melrose Place

Friends

Everybody Loves Raymond

Now Everybody Loves Raymond was something I watched regularly in my newly married years. My poor husband, he must have thought he had married a complete stranger or a fraud.

I thought our lives had to look like the Barone’s. From a logistical point of view, we had no kids, no family living close by and my husband didn’t try and sneak off to play golf every chance he could. In fact we were nothing like the Barones. Didn’t mean I didn’t take on the persona of Debra Barone. I thought that was marriage. Fortunately we got into our own groove and I don’t rely on television to shape our marriage.

The show Friends really pissed me off. There was no convenient cafe with a large couch anywhere I could find. My friends and I certainly did not bicker and treat each other the way these friends did. Being autistic I would rather swim with sharks than deal with confrontation.

Now I watch shows like Pretty Little Liars and Vampire Diaries and feel an ache for my younger neurodivergent family.

It’s so difficult to not turn to television if you’ve been flying under the radar and masking. It sets us up for failure time and again. I’m not even going to delve into my failed dating life.

I don’t have any sage advice to offer about television but it is all scripted. Neurotypical writers, wrote the lines for these actors. They are in character and they go home to messy unscripted lives. We only see what’s in the frame of the camera. Behind that camera is a sound stage with staff all paid to make that television show watchable. Watch and enjoy. Turn to your neurodivergent tribe to wade through your confusion. Our lives don’t have to be tv worthy.

© Laura Lewis Autism Mentoring 2020

Rejection Sensitive Dysphoria

Rejection Sensitive Dysphoria

I must give full credit to Autistic Pride Mumma for introducing me to this. I thought I was the only one who was so stymied by rejection to the point I could not ask someone to help me with anything or to do anything with me. The words in the accompanying meme nail my experiences exactly.

I learned about this from Amanda (Big thank you!) and as you can see she learned from the neurodiverse community herself. So I thought I would share this meme and Amanda’s writings to help spread the word.

So it’s not enough to struggle with social niceties that baffle us we also have to be awkward AF about rejection as well.

I think I fear rejection almost more than anything else. I can happily speak in front of a large crowd. Sing karaoke sober, dance in the street because it makes me happy but I will not expose myself to rejection.

Rejection is a hot mess of confusion and unwritten rules I just cannot navigate. I will always personalize it. Doesn’t matter, I will always personalize it. I would rather not expose myself to this pain and risk an opportunity. To be completely honest, I have put myself out there in certain circumstances but I will have a buffer of protection prepared. I will plan for the rejection with excuses they may come up with and why. This is usually around my passion of helping other autistic youth start their own microbusiness. Now it doesn’t mean I don’t feel the pain any less intensely, it just means I am prepared for it. I will then retreat to my bed for at least 48 hours and then recover. I pledge I will never expose myself again and yet I still do.

It is impossible to avoid rejection but I know speaking for myself I do not develop resiliency around this. It is painful each and every time. This awareness, thanks to the sharing from Autistic Pride Mumma has been incredibly helpful.

Unheeded

The medical model of disability says people are disabled by their impairments or differences. Under the medical model, these impairments or differences should be ‘fixed’ or changed by medical and other treatments, even when the impairment or difference does not cause pain or illness. http://www.disabilitynotthinghamshire.org.uk

I want to be very clear about something. I am only writing about my own experience with disability. I cannot speak for anyone else. I know I have had conversations around this with friends who would speak a similar truth and then I have had conversations with others who most definitely would seek a cure. I don’t want this to be divisive or topical. This is purely my own thoughts and feelings. You can’t argue with them. You can’t tell me I should feel or think a different way. That ain’t going to work.

Back to that rhetorical question I have been pondering – who decides on what is a meaningful life? Again it’s a rhetorical question. I do not want your opinion or a debate around this. There will never be an agreement on this. There’s defiant people like myself who will never give in or give up. Talk about resiliency! We keep asking to learn how to fish rather than dished up a serving of fish.

I don’t know how to skirt around certain things and remain diplomatic. In a conversation with a friend this morning she said she doesn’t care how many bridges she burns. I totally relate. My reply was let’s not burn the bridge down, let’s throw a grenade and blow it up. I haven’t done that yet as there will be no returning from that. It is tempting.

This is about capacity and competency and the assumptions abled bodied people make about us. As an autistic person, I know my failings. Believe me, I know. I live with them every single mother fucking day. I see my mountain of folding. I see the dust. I see the pile of books. Some read, some unread, some started and never to be picked up again. I have very important business cards and notes from meetings lying around in various piles demanding attention. I simply don’t know where to start. Executive disfunction is having a herd of elephants in your house and thinking about how to eat them all in one go. I can’t even think about starting with one bite. Lao Tzu may as well bang his head against a brick wall to get me to start a thousand mile journey. I am too busy thinking about what to pack, when to start packing, how many pairs of shoes I will need. And importantly I would need to unpack from my last trip. Wherever that was. Then do I need a passport? Forget that because I haven’t even filled out the form for the passport as that involves a level of planning also.

Despite these lets call them deficits, (They’re not by the way, just challenges that require support) I have such a capacity for so much. I can create and start a business with $20. I can teach others how to do this. Social media content? I love creating fun content. I might procrastinate over this also, but once I am on a roll I schedule a heap of content for my son’s Facebook page. I love nothing more than to connect with other creatives (read neurodivergents) and plan projects and talk about our wild ideas and dreams. Believe it or not, some of those ideas do come to fruition.

When it comes to running a business, I recognise my pitfalls. It’s hard to get support when you have zero budget. How do you apply for a grant when you have practically have a phobia around filling out forms. I would never expect anyone to work for nothing. What would be helpful for myself, and others I know, would be to connect with people in Government who can support us. Who can help our startup stay up. We’re not asking for any handouts just skills. Teach us. Show us don’t tell us. My friends and I have talked about this quite a bit. We have a vast amount of knowledge and experience to share. The problem is; we are wildly undervalued. We know this, we have always known this and we continue to have this reinforced. So very disappointing. So very disheartening.

Change must come. Change must start. It can’t be small, it has to be an avalanche. We are tired of being unheard. When we actually do command attention, we are unheeded. We feel redundant. It’s a spectacularly low place to sit.

We watch other able bodied people with similar ideas to us receive the very support we were seeking. It breaks our hearts. It tears us apart and we feel resentment. We feel betrayed. Please stop doing this to us.

I want to be very clear about something. I am only writing about my own experience with disability. I cannot speak for anyone else. I know I have had conversations around this with friends who would speak a similar truth and then I have had conversations with others who most definitely would seek a cure. I don’t want this to be divisive or topical. This is purely my own thoughts and feelings. You can’t argue with them. You can’t tell me I should feel or think a different way. That ain’t going to work.

Back to that rhetorical question I have been pondering – who decides on what is a meaningful life? Again it’s a rhetorical question. I do not want your opinion or a debate around this. There will never be an agreement on this. There’s defiant people like myself who will never give in or give up. Talk about resiliency! We keep asking to learn how to fish rather than dished up a serving of fish.

I don’t know how to skirt around certain things and remain diplomatic. In a conversation with a friend this morning she said she doesn’t care how many bridges she burns. I totally relate. My reply was let’s not burn the bridge down, let’s throw a grenade and blow it up. I haven’t done that yet as there will be no returning from that. It is tempting.

This is about capacity and competency and the assumptions abled bodied people make about us. As an autistic person, I know my failings. Believe me, I know. I live with them every single mother fucking day. I see my mountain of folding. I see the dust. I see the pile of books. Some read, some unread, some started and never to be picked up again. I have very important business cards and notes from meetings lying around in various piles demanding attention. I simply don’t know where to start. Executive disfunction is having a herd of elephants in your house and thinking about how to eat them all in one go. I can’t even think about starting with one bite. Lao Tzu may as well bang his head against a brick wall to get me to start a thousand mile journey. I am too busy thinking about what to pack, when to start packing, how many pairs of shoes I will need. And importantly I would need to unpack from my last trip. Wherever that was. Then do I need a passport? Forget that because I haven’t even filled out the form for the passport as that involves a level of planning also.

Despite these lets call them deficits, (They’re not by the way, just challenges that require support) I have such a capacity for so much. I can create and start a business with $20. I can teach others how to do this. Social media content? I love creating fun content. I might procrastinate over this also, but once I am on a roll I schedule a heap of content for my son’s Facebook page. I love nothing more than to connect with other creatives (read neurodivergents) and plan projects and talk about our wild ideas and dreams. Believe it or not, some of those ideas do come to fruition. 

When it comes to running a business, I recognise my pitfalls. It’s hard to get support when you have zero budget. How do you apply for a grant when you have practically have a phobia around filling out forms. I would never expect anyone to work for nothing. What would be helpful for myself, and others I know, would be to connect with people in Government who can support us. Who can help our startup stay up. We’re not asking for any handouts just skills. Teach us. Show us don’t tell us. My friends and I have talked about this quite a bit. We have a vast amount of knowledge and experience to share. The problem is; we are wildly undervalued. We know this, we have always known this and we continue to have this reinforced. So very disappointing. So very disheartening. 

Change must come. Change must start. It can’t be small, it has to be an avalanche. We are tired of being unheard. When we actually do command attention, we are unheeded. We feel redundant. It’s a spectacularly low place to sit.

We watch other able bodied people with similar ideas to us receive the very support we were seeking. It breaks our hearts. It tears us apart and we feel resentment. We feel betrayed. Please stop doing this to us.

My own private fury

I feel like unleashing a tsunami of frustration and fury. Unlike the so called prediction of a tsunami of children being diagnosed autistic. Which is not accurate by the way. Relax it is just scaremongering. You know we really should be used to that clickbait tactic used by organisations or people wanting to financially benefit from scaremongering. Mostly the news and the charlatans. My advice; do not read online articles published by news. There is no cure. There is no known cause. There is just people wanting to profit from desperation. Soon I will show you what fury looks like for me.

First let’s explore what Google’s definition of fury is:

Wild or violent anger

Extreme strength or violence in an action or a natural phenomenon.

My definition of fury is very complex. Like a recipe it has many ingredients. Blended together they do not make a delicious treat for my taste buds but instead help me understand the utter loss, grief, missed opportunities, pain, suffering, loss of money and I think I will stop there. I am getting furious about writing about fury. How ironic.

Yesterday, I had a meeting to review my son’s NDIS plan. I don’t want to write about that but I do want to include this comment as it is very relevant when describing my state of mind at present. Who gets to decide what is and what is not a meaningful life. Now this is a rhetorical question? I don’t think any one answer will satisfy me.

Anyway back to me. I was diagnosed with autism last year at fifty. Recently I have also received an ADHD diagnosis. I am grieving the loss of an early diagnosis. Of what could have been. I feel like I have lost so much while at the same time gaining more. I also feel validated and I feel a sense of belonging. I have found a brilliant, colourful and stunning neurodiverse tribe. How I survived without these beautiful people in my life I can’t comprehend.

See this envelope. I received it yesterday. I have not opened it yet. I did ask for it but now I am really scared of the contents. The contents of this letter which contains several pages are dates. Dates of admissions into a psychiatric facility. Dates of ECT (electro convulsive therapy). Dates of attendance to day programs. And the one date of an admission into the Special Care Unit (a locked ward). I asked for a specific reason but now the bulkiness of the letter has quite frankly stumped me.

I have spent nine years thinking I am crazy. I have spent a lifetime of not fitting in but nine years with a misdiagnosis that still attracts an awful stigma. Of course my psychiatrist will argue these diagnoses are co-occurring. But would I have had ECT? Would I have a permanent short term memory impairment? As much as I defiantly advocate about the need to have healthy and open conversations around mental illness, how different would my life be? Imagine if there was more robust screening for autism in women. Imagine if an early precursor was having an autistic child. I don’t know the statistics but every autistic woman I have met who is a mother was diagnosed as a result of having an autistic child. I have been ridiculed online by parents of kids who go to school with my kids. Painful at the time but believe me I am so glad they are not in my life. I am so glad that the past nine years have shaken up the friendship bottle and let the scum rise to the top. I have skimmed several times and removed them.

I am getting into a groove with my own self identity. Writing about it has been the very best therapy. I have always loved writing and I love to share my writing. I don’t really care if it’s not read but if it is read and helps someone else I am so thrilled. Parenting an autistic young man, I do know and understand so much about him. Here’s what I know about him.

We have always accepted him and his ‘isms’ as we like to call them

We have encouraged his passions and learned about them also

We have demanded the world meet him on his terms rather than him change to satisfy what is expected as typical

We have recognized and made a considerable effort to support the co-occurring diagnoses in his life

We have loved him and celebrated his uniqueness.

We are incredibly proud of our funny, loving and intelligent young man

Although this has helped me understand autism to a certain point, it hasn’t helped me with the massive resentment I am experiencing at present. What ifs are not helpful. The plain and brutal truth is I can’t take anything back. I do not get a do over. I have to find a way to move on. To let this go and have peace about missed opportunities. As I am learning to lower my mask I am learning to forgive myself. Forgiving the process that continues to fail many older undiagnosed autistic people is not so easy.

This is what fury looks like to me. I can’t even open this envelope and I am so angry. I don’t know when I will open it. I was emailed an electronic copy which I also have not opened. The healing process will definitely be helped by me opening this envelope. I just need to do it in a controlled environment where I can talk and feel safe.

© Laura Lewis Autism Mentoring 2020

Maslow’s Hierarchy of Needs

If an individual found that any of their first four needs were in deficiency, then they wouldn’t be able to effectively pursue their growth needs for a sustained period of time.

Source: http://www.interiorsandsources.com

I like to use Maslow’s Hierarchy of Needs when I advocate. It’s pretty hard to argue against. It’s convincing. Today I am going to wade a vicarious path through the garden of ‘Deficits’ for people with a disability. How we spend a fair whack of our time in the purple sector of this hierarchy working on overcoming deficits. Not a word I really like but it’s used in the article I have referred to.

There is so much written about autistic lives. How challenging we are. How difficult we are to work with, to parent, to understand. And we’re talking about an invisible disability! A little secret – we are everywhere. We are hiding in plain sight. We lurk around in your life and most have no idea. I do not have a physical disability and don’t even dare to speak on their behalf. But, a physical disability is seen as problematic in and of itself. Assumptions are made about the capacity to make decisions around their own safety and capabilities. I know this from conversations with friends.

Whatever our disability, we spend a fair chunk of our lives in the purple sector. This consumes our energy in so many ways. I have a friend who is a wheelchair user. She has been fighting the state education system for fair access to her child’s classroom. This fight has consumed her. She has felt mentally unsafe. She feels gaslighted and this experience is damaging for her, her family, her friends and ultimately her community. This same friend is an active advocate. She is a wonderful friend and a talented jazz performer. Guess what she spends the least amount of time doing? Performing!

I wanted to talk about my friend before I talked about me. I also have permission from her to write about her. As an autistic person, I find the challenges I need to overcome are mostly hidden from people. It still consumes so much of my physical and mental stamina. My executive disfunction means I have a wealth of information at my fingertips which is unfiled, disorganised and overwhelming. I like to stick to statistics when advocating. Again, you cannot argue with the Australian Bureau of Statistics. However, I at times can’t even find the statistics I need by googling.

For the past fifteen years, I have devoted much of my time to maintaining a good relationship with the school my autistic son attended. This involved, overlooking stuff that at times you are upset by. You pick your battles, because you are labeled a pesky parent for asking for reasonable adjustments. And guess what? The state education system actually has an Inclusive Education Policy that eludes to promises of these reasonable adjustments. They don’t automatically happen. Here’s how I got the ball rolling at my son’s school. May 2018 the Inclusive Education Policy is launched. I read it with much delight. I emailed the school Principal hoping to meet to discuss the three points raised. One being ha ha ha collaboration with parents. His reply was a simple no. His boss, the Education Minister signed off on this. But he has so much autonomy, he can decide to not endorse this policy.

My next step was to contact another arm of the education department. The outcome was a meeting with the school with an autism coach, an inclusion coach and some kind of regional Guidance Officer also. I kid you not. We met a few times. We had minutes of meetings. Yet really, nothing changed. I expended a shit ton load of emotional energy. These are such common events for people with a disability. Not necessarily this exact scenario but they all look the same. We politely ask for reasonable adjustments. We refer to government endorsed policy and sometimes even law and there is still no change.

We sit in that purple sector for the length and breadth of our lives and feel trampled. We are bulldozed and some give up. I can’t give up. I think it is because I am so consumed with fury. My black and white thinking tells me something is either right or it’s wrong. I am also a persistent person. I keep knocking on doors. Usually they either don’t open or are slammed in my face. It takes a toll on me, but I rally and keep on knocking. I will find that door.

I don’t think it is too much to ask that we can move from a deficiency status to a growth status. When we tell our government representatives we want to work. We want to start our own business or social enterprise, we should be taken seriously. It boils down to dropping a pebble in a pond. Being listened to will create such a massive ripple effect. Listen to us. Support us. Don’t tell us, show us. Empower us. Help us to help ourselves. We are so tired of begging. I keep thinking of the lyrics from the song Uprising by Muse.

The paranoia is in bloom, the PR

Transmissions will resume

They’ll try to push drugs

That keep us dumbed down and hope that

We will never see the truth around

Another promise, another scene,

Another package lie to keep us trapped in greed

With all the green belts wrapped around our minds

And endless red tape to keep the truth confined

They will not force us

They will stop degrading us

They will not control us

We will be victorious

Interchanging mind control

Come let the revolution take its toll if you could

Flick a switch and open your third eye, you’d see that

We should never be afraid to die

Rise up and take the power back, it’s time that

The fat cats had a heart attack, you know that

Their time is coming to an end

We have to unify and watch our flag ascend

They will not force us

They will stop degrading us

They will not control us

We will be victorious

There is so much talk about diversity and inclusion. SO MUCH TALK. But there is no action. Yes we have seen tokenism. It is lauded in the headlines almost on the same level as Jesus turning water into wine. It is nothing but clickbait. We still live a life of deficit. We do not rarely pass from the bottom level of the hierarchy. And until we can stop expending our energy on the fundamentals of life this will not change.

© Laura Lewis Autism Mentoring 2020

I like to use Maslow’s Hierarchy of Needs when I advocate. It’s pretty hard to argue against. It’s convincing. Today I am going to wade a vicarious path through the garden of ‘Deficits’ for people with a disability. How we spend a fair whack of our time in the purple sector of this hierarchy working on overcoming deficits. Not a word I really like but it’s used in the article I have referred to.

There is so much written about autistic lives. How challenging we are. How difficult we are to work with, to parent, to understand. And we’re talking about an invisible disability! A little secret – we are everywhere. We are hiding in plain sight. We lurk around in your life and most have no idea. I do not have a physical disability and don’t even dare to speak on their behalf. But, a physical disability is seen as problematic in and of itself. Assumptions are made about the capacity to make decisions around their own safety and capabilities. I know this from conversations with friends. 

Whatever our disability, we spend a fair chunk of our lives in the purple sector. This consumes our energy in so many ways. I have a friend who is a wheelchair user. She has been fighting the state education system for fair access to her child’s classroom. This fight has consumed her. She has felt mentally unsafe. She feels gaslighted and this experience is damaging for her, her family, her friends and ultimately her community. This same friend is an active advocate. She is a wonderful friend and a talented jazz performer. Guess what she spends the least amount of time doing? Performing! 

I wanted to talk about my friend before I talked about me. I also have permission from her to write about her. As an autistic person, I find the challenges I need to overcome are mostly hidden from people. It still consumes so much of my physical and mental stamina. My executive disfunction means I have a wealth of information at my fingertips which is unfiled, disorganised and overwhelming. I like to stick to statistics when advocating. Again, you cannot argue with the Australian Bureau of Statistics. However, I at times can’t even find the statistics I need by googling. 

For the past fifteen years, I have devoted much of my time to maintaining a good relationship with the school my autistic son attended. This involved, overlooking stuff that at times you are upset by. You pick your battles, because you are labeled a pesky parent for asking for reasonable adjustments. And guess what? The state education system actually has an Inclusive Education Policy that eludes to promises of these reasonable adjustments. They don’t automatically happen. Here’s how I got the ball rolling at my son’s school. May 2018 the Inclusive Education Policy is launched. I read it with much delight. I emailed the school Principal hoping to meet to discuss the three points raised. One being ha ha ha collaboration with parents. His reply was a simple no. His boss, the Education Minister signed off on this. But he has so much autonomy, he can decide to not endorse this policy.

My next step was to contact another arm of the education department. The outcome was a meeting with the school with an autism coach, an inclusion coach and some kind of regional Guidance Officer also. I kid you not. We met a few times. We had minutes of meetings. Yet really, nothing changed. I expended a shit ton load of emotional energy. These are such common events for people with a disability. Not necessarily this exact scenario but they all look the same. We politely ask for reasonable adjustments. We refer to government endorsed policy and sometimes even law and there is still no change.

We sit in that purple sector for the length and breadth of our lives and feel trampled. We are bulldozed and some give up. I can’t give up. I think it is because I am so consumed with fury. My black and white thinking tells me something is either right or it’s wrong. I am also a persistent person. I keep knocking on doors. Usually they either don’t open or are slammed in my face. It takes a toll on me, but I rally and keep on knocking. I will find that door. 

I don’t think it is too much to ask that we can move from a deficiency status to a growth status. When we tell our government representatives we want to work. We want to start our own business or social enterprise, we should be taken seriously. It boils down to dropping a pebble in a pond. Being listened to will create such a massive ripple effect. Listen to us. Support us. Don’t tell us, show us. Empower us. Help us to help ourselves. We are so tired of begging. I keep thinking of the lyrics from the song Uprising by Muse.

The paranoia is in bloom, the PR

Transmissions will resume

They’ll try to push drugs

That keep us dumbed down and hope that 

We will never see the truth around

Another promise, another scene,

Another package lie to keep us trapped in greed

With all the green belts wrapped around our minds

And endless red tape to keep the truth confined

They will not force us

They will stop degrading us

They will not control us

We will be victorious

Interchanging mind control

Come let the revolution take its toll if you could

Flick a switch and open your third eye, you’d see that 

We should never be afraid to die

Rise up and take the power back, it’s time that 

The fat cats had a heart attack, you know that

Their time is coming to an end

We have to unify and watch our flag ascend

They will not force us

They will stop degrading us

They will not control us

We will be victorious 

There is so much talk about diversity and inclusion. SO MUCH TALK. But there is no action. Yes we have seen tokenism. It is lauded in the headlines almost on the same level as Jesus turning water into wine. It is nothing but clickbait. We still live a life of deficit. We do not rarely pass from the bottom level of the hierarchy. And until we can stop expending our energy on the fundamentals of life this will not change.

© Laura Lewis Autism Mentoring 2020

I am not invisible

I am as guilty as anyone of looking at people older than me and immediately dismissing them based on my two second assessment of who they are and the life in their years. Now, I too am that dismissed person. I am invisible. Age and size does that. I feel overwhelming grief but in the same breath I also feel incredible gratitude. Not everyone has the privilege of aging.

Weekly regime

Young Laura, (the Laura before learning that standing up means getting knocked down and that physical injuries will not hurt as much as emotional injuries) was a true Pollyanna. Glad about everything! Seeing life with potential, and had never come up against anything other than some playground bullying. This Laura grasped the world, shook it and kept everything she loved that fell out.

A lover of live music. A lover of people who never fit in. A lover of literature. A lover of her family and dearest friends. A dreamer. Loyal to a fault. Kind and generous, always. Sixteen and never been kissed almost. It happened around that time. I wonder where he is now. A mix of daring adventures and still fearful of the unknown. A person who would jump on stage with the Priscilla Queen of the Desert Drag Show at Erskineville Pub to win a bet with her mate. A person who would skinny dip in public places (always alone) very late at night. As I write this I am almost trying to convince myself, I am still that same person.

Of course I am that same person, but nobody knows that. Every person over fifty should have a disclaimer they can hand out listing all the cool things they were and are. I am still that cool person. I yearn to skinny dip in public late at night. I yearn for the unconventional. The risks.

There have been moments of such wreckless abandon in my life and I feel so achingly sad that they are now just memories. Sleeping on the beach with school friends. In the middle of summer, but a beach at night is freezing. We were not drunk just young and dumb. Always the one in the mosh pit at all the Ska bands I saw. Kicking it out and stomping. Going to an after party with Aussie Crawl at sixteen. That was an eye opener! Even as I was exploring the edges of my boundaries I stayed true to my values.

I married for the first time at nineteen. Yes I was in love but I was still a child. I had so much to learn about myself. I was not ready to be half of a union. As my half was so pliable and still learning who I was. Once I figured it out, I realised I was not the right half for this union. Thus began seven years of feeling lost. Breaking rules. Drinking too much and too often. Not valuing my body. No honour for myself and no self respect. I thought I was having fun. Yes, at times of course I was. But there was a whole chapter of self loathing in that part of my life. Self loathing in big bold italics. Moving to bigger cities. Each one bigger then the next. Loving each one but never feeling settled.

I really don’t know know who I am trying to convince here. I think, most likely it’s me. I am starting to really look older than I am happy about. I am considering Botox. I know, right! I feel invisible. And here’s the stick; I don’t want to be the centre of attention at all. I just don’t want to be dismissed. I don’t want people to do to me what I have done to others. I am also very uncomfortable and sorry about this. It grates on me so much that I have done this. I have stripped the exciting and colourful moments from people and in my mind they were bland, colourless pawns. Exactly how I feel now.

Of course, I know everyone has excitement in their lives. I am not that egocentric. It’s just I don’t think I ever grew out of that childhood mindset where life for everything and everyone ends the moment it is not in your peripheral vision.

I am really trying to work through a lot of issues in this blog. Maybe too many actually. I don’t understand how a child with so much anxiety (Moi) could do some truly audacious things in her teenage and young adult years and then fucking break so badly that she can’t put herself back together.

I had my hair done on Saturday and I am not at all happy about the result. Why did I not tell them? Why can I complain about the vinegar tits who was the water Nazi in hospital but not about the hair colour I ended up with. It suddenly occurred to me. If I think it’s about social justice, I will speak up. I will stand up for myself or for anyone else. Hair is not social justice. It wasn’t important enough in my personal hierarchy of needs. What a breakthrough moment.

The next step is to decipher what is a mountain and what is a hill. Too often I have chosen to wage a war and die on a hill while never taking on the mountain that was looming in the horizon. The issue is my outrage feels equal and I load up my kit to prepare for Mt Everest even though I am only strolling up a grassy incline.

Picking my battles is definitely a skill that will be worth learning. Knowing when it’s ok to walk away or when it’s worth speaking up could really be an important life changing strength. Freeing up my energy or giving me permission to dare I say it – chill.

© Laura Lewis 2020