Never Say Never

I have learned over the course of my life to never say never. I have been a bit slow on the uptake but I finally caught on. My son was most definitely the catalyst in helping me. Somehow though, this mindset just does not fit with myself. I am an enthusiastic and curious person always questioning and seeking better pathways for everyone except me.

I’m am currently trying to work through my personal journey with no longer identifying as a victim. Why it took so long to move on from that and why have I not found a landing, be it temporary or permanent, for my psyche to rest.

I do feel that I have reclaimed some parts of me that were broken. Don’t be confused, I am still the sum total of all my broken parts. Now here is where I could write some cheesy analogy about needing to crack to let the light in. Or bending in gusty wind like grass rather than uprooting like strong but rigid Oak trees. That is definitely not how it is. I have painfully gathered my broken pieces, my backstory, my dreams and rebuilt a version of myself that is different but still recognisable. It’s taken a stack of bluetac, super glue, staples, gaffer tape, string and paper clips all working together, doing their very best to keep me contained. Keep the illusion of being whole. I know deep inside my heart that accepting this is the way it will always be, is a positive step forward for me.

This is a far more accurate analogy and completely relatable. You see I continue to find broken pieces and the very temporary nature of my fixings means I can steal a bit of bluetac from one place, untie some string or add another bit to a paper clip. Evolving and adapting with no fixed recovery expected but still keeping my shit together. A far more sensible and realistic approach.

Recovery is a word I have a big problem with. I just can’t identify with that word. Similarly identifying as a survivor is as foreign a concept as living on Mars. I haven’t decided that I have survived this and don’t think I ever will. I am not in recovery, and I will never be recovered. The very essence of me has always been broken and there’s little possibility of finding any release. I have faced some really dark times and I carry far too much trauma. I never feel safe and am ready at a whim to take flight.

If I feel a hint of danger, I cut people from my life. I have no room for any more emotional scars. I would prefer loneliness over the pain of betrayal. This is certainly something I believe is very common with autistic people. Again, I am not writing about this but google Rejection Dysphoria Syndrome. I have lived my whole life (nearly 53 years) feeling terrified of the smallest rejections from even people who are not significant in my life. It is far easier to sink into a quiet reclusive life than to keep hunting for infinite quantities of bluetac, staples and paper clips.

I am not settling as settling would be to not challenge myself and to not step out of my comfort zone. I do step out of my comfort zone far more than I like. I choose to do this in ways that involve helping other people. It feels worthwhile and gives me purpose.

Last night I was with my daughter, and she reminded me about a time when I had to confront her first boss. He was a bully. He yelled at his young staff. This was her first part time job and she gave it a good crack. She said she could deal with it until the day she couldn’t. She was feeling sick about going to work. She was 15. She was scared to face him. She was owed pay and she had been exploited with having to undertake nine hours of unpaid training. Three shifts of three hours. I first rang Fair Work and sought advice. I then recorded the whole conversation (I have a short term memory impairment and needed to recollect the conversation not use the recording) and I told him upfront I had received advice from Fair Work to ensure my daughter received her full pay. He was difficult and not happy that she had given no notice. I reminded him that she was a casual and owed him no notice. While listening to this recording last night with my daughter I couldn’t believe how calm and brave I sounded. This was the first time my daughter had heard the exchange. I wouldn’t allow it three years ago. She was paid for her outstanding wages but not her trial. We decided to just move on.

I am not great with the whole notion of any type of conflict particularly when it is about me but will not hesitate to jump right in when it comes to defending my family and others. I am not a good bystander. I loathe bullying. Yet I tolerate it when it’s directed towards me. I understand why. There’s a four year old me who didn’t have the words to stand up for herself and that has set a precedence that I still cannot budge.

Little me at three

I know I have traveled light years metaphorically speaking. To finally not feel like a victim and to embrace that is huge. I’ll keep walking around blindfolded with my hands out in front hoping one day I will find the right way to identify without using recovery or survivor as a description.


Another winter day
Has come and gone away
In even Paris and Rome
And I wanna go home
Let me go home – Michael Bubke

My home is where my family is

It’s so hard to believe it has been one year since we bought our forever home. 365 days or a trip around the sun. That’s four seasons and all of us a year older. Our first Christmas in our new home. Our first flood.

I still am so very surprised how hard the move was for me. Moving is never easy for anyone. It’s stressful and exhausting. I had planned where everything would go and was so excited about creating a beautiful home that specifically had my style. Let me just say that nothing ended up how I planned.

I’ve replaced furniture, removed furniture or clutter and rehung pictures several times. I’m pretty close to being finished. What I should have done is move with what we had, lived in the house and then started creating our home. Hindsight as they say. I have a passion for the old and the quirky. I’m surrounded by old books, interesting and weird things but they really don’t matter that much I have learned.

It’s my family that makes my home. I come home for them not for the things I have collected. I’m very proud of our home but mostly because it’s a safe haven for our family.

The transition was very difficult. I think that is because I’m 52 and everything hurts these days. Also I have been learning to unmask and live an authentic autistic life. I have always struggled with transition. I arrive anywhere at least 30 minutes early to give myself a chance to create certain closure from where I was and be prepared for where I’m headed. I have always done this.

You can’t do that when moving house. The best I can do is leave my old house and never return. Now this places a large burden on my husband. Even after the removalist leaves, there are always things left behind. Pot plants, laundry items, garden shed stuff. So every time we have ever moved, my poor husband has been left with clearing out the last bits. I’m so grateful he has always done this and now we understand why.

Our new home is across the road from the train line. We expected we would acclimatise to the noise. Well I love it. The sound of trains for me is very comforting for a few reasons.

Our house is a quiet and peaceful house. We are a family of autistic or introverts. We respect each other’s needs for downtime and for not speaking too. I love the quiet, peace of our home. In fact bird life flourishes and will continue to do so as we plant more natives.

One of my earliest memories of childhood is from the time we lived in Biloela. I grew up in a safe home. I remember lying in bed (we moved to Brisbane when I was five) and hearing the train. I think it may have been cattle trains as the baying of cows is also a comforting sound. Not that I hear cows now. From my bedroom the sound of the trains is much quieter but so comforting. It takes me back to times of being loved, cared for and protected.

I’m home alone most week days. The sound of trains is a comfort for different reasons. I have always loved domestic sounds. A neighbour washing the dishes, a house being renovated, a lawn being mowed and of course trains. These sounds remind me of the suburban bustle and life outside my quiet home.

I remember a time when I was living in Sydney. One Sunday afternoon I could hear Glen Campbell singing Galveston from a very tinny transistor radio. I was overwhelmed with such feelings of homesickness. Not for home but family. That song and the sound of a lawnmower will forever remind me of my childhood. My Mum worked weekends and Dad was it for us. Fortunately Dad is a very good cook and always a great caring and supportive Father.

Our beautiful Queenslander

I love my home. I’m very proud of the beams and dreams. I’m very proud of our values and our hard work and fierce independence. It’s just a house though. My home will always be where my family is. They nourish my soul and are my safe harbour. They also protect me and keep me safe. They’ve seen me at my worst and get the very best of me also. It’s very easy to forget what truly matters at the moment. But in these difficult times, what truly matters is what will always be there for you.

My family - the people I wake up to and the people who I farewell before sleep. 

Aha is not just the name of a band!

It’s also the sound I make with every clarifying memory from my childhood.

I think I became much more adept at masking later into my teens. I think also it’s because I had to as a coping and camouflage mechanism. Before then I was the precocious child with an astonishing grasp of language who was reading books at every chance. Sure I tried ballet – that lasted two years. I played netball, but as a team sport if you play Goal Keeper there’s not much teaming to do. I did enjoy netball and made a few great friends I still have today.

A memory lambasted into my consciousness this morning. Thanks memory. There’s good memories, there’s ones you don’t dare surface and then there’s the aha memories. This particular one had me feeling so cheugy (uncool and used specifically to annoy my daughter. She says people like me don’t use cheugy). One day she’ll return to the loving daughter I used to know.

Me Grade 5. Tallest girl in photo. Marching out of time.

The summer before I started high school, our family had a three week vacation on the Gold Coast. We had had other vacations but this was different. It was longer. We were staying in a two bedroom unit. To me it felt almost semi permanent. I remember feeling very excited. I loved the beach and was fearless in the water. I can’t remember if I packed by myself or with Mum’s supervision. It wouldn’t surprise if it was by myself as I was fiercely independent. Something I’m not now.

This was no five star accommodation. We had to take our own bed linen. I’m pretty certain my purple ballerina sheets would have been packed. I may be independent but I was also very attached to all things most pre teens distanced them from. Still loved Barbie and dolls.

I can remember arriving at the units and probably after excitedly exploring I would have unpacked. Although this part is not seared in my memory. What is seared is the reaction from my friend. A very good friend. In fact we are still very close. Her and her family had been holidaying at the place for years. We went on to enjoy years of holidays with her and her family. Making the loveliest memories.

They had arrived from Sydney and I think already spent a week there. We both would have been bursting to see each other and I’m sure she was over to visit pronto. Through her neuronormative lens she took one look at how I’d set up my half of the room I was sharing with my sister. Then pointed out in words I can’t exactly recall (and not at all unkind, but with the directness only youth can carry) told me the doily and figurines and photo frames on the dressing table were really quite over the top.

Let me state again that I really can understand her bewilderment as she has been holidaying at the place for many years. I brought my autistic lens to the vacation. Bringing familiar objects from home was a great and innovative coping mechanism for undiagnosed me. I have never been great with transition. As excited as I was about a holiday at the beach with my bestie, there was an innate sense of reclaiming stability too.

I can remember the figurines. They were two doves and they were the kind that changed colour depending on the weather. A bit of a fad at the time. I’ve always loved doily’s. They still adorn my home.

That’s an aha moment. When I have these moments my autism diagnosis helps me understand more. Sometimes my aha moments are a bit painful or embarrassing but only looking back. I don’t feel embarrassed now. I just feel for the younger me. Maybe I wouldn’t have joined in a treasure hunt at a park that was for a stranger’s birthday. Maybe I would have been able to find ways to transition that would have been helpful. Who knows?

The important thing is that I have the opportunity to reframe these memories and be kinder to that little girl. To not cast my mind back and be so harsh on myself. I was doing the best I could with what I knew. I have heaps of cheugy moments now. The difference is I’m a fan of the cheugy. I seek it out. I embrace it. I recognise and welcome it in others. I have friends who appreciate it in me. So give me a ‘C’

Embrace your inner cheugy

Laura Lewis (c) 2021

The Chicken or the Egg trying to decode Autism/ADHD and mental illness.

Content Warning! Suicide ideation

Not an oddball just neurodivergent

It’s a firm fact autism and ADHD is a genetic neurotype we are born with. Being unaware of this in ourselves does not make us less autistic.

For most of my life I have hovered between feeling unique and thus maybe special (coping mechanism), feeling unique and that I must be a weirdo (inner ableism), thinking I don’t fit in and thinking it was my fault or struggling with anxiety, depression and at times paranoia.

My first diagnosis was post natal depression in 2003. I am going to break this down further. I was living 1000km away from my close knit family and was homesick and lonely. I had this beautiful baby who I thought was perfect. I made all his baby food using organic ingredients and he could not tolerate any type of solids. I blamed myself. I was doing something wrong. My baby was happy and content and could eat runny Farex and certainly loved his bottle. I was taught how to play with him because he only played with wheels. And you know what I now believe there was nothing wrong with the way he played.

I insisted on flying back to my GP for the post natal diagnosis. I didn’t trust myself. I felt it was important to see a GP who knew me well. He prescribed me with an anti depressant that over the next few years I had to increase the dosage of as my tolerance to it increased.

Fast forward eight years. I was back living in my hometown and I had a catastrophic breakdown. On 9 January 2011 amidst the torrential rain that devastated South East Qld, I was admitted into a private psychiatric hospital. This is a day I have no recollection of. I only know the timeline thanks to my husband and Mum sharing the events of that day.

In 2011 I had multiple admissions in this psychiatric hospital. In fact I spent more of 2011 in hospital than at home. During one of those admissions my psychiatrist recommended electro convulsive therapy as he felt we had exhausted all treatment options. When I look back over this period, this is the first time I wished I had my autism diagnosis. Of course having it much earlier than 42 (my age in 2011) would have made my life easier; avoiding ECT is something I wish I could have chosen. That treatment has left me with a permanent short term memory impairment. Basically an acquired brain injury.

2011 was also a year I first really was exposed to the nasty gossip mill of Mothers at school. This played out at school and on social media. I witnessed some of it. It was painful, I became suicidal and developed an inability to trust most people. Cruel words by narrow minded women that made my world smaller. I was scared to venture out to my local shops and picking my kids up at school felt like entering a battle field.

It’s counter productive to ruminate over how my life would be with an earlier autism diagnosis. But it is equally hard to not wonder. Over the next five years I had more hospital admissions. When I was not in hospital I attended two day programs a week. An outpatient service that I was very committed to. I saw my psychiatrist weekly. A mental health nurse visited me at home each week.

In hospital I was away from my husband and young children. At home I was practically institutionalized. I was working so hard on my recovery with the little knowledge I had. I spent a lot of time in bed when I was not at day programs. I was not living and it was barely existing.

A few things happened around 2015. The women who participated in the gossip that nearly destroyed me, had moved on. They’d moved schools and left the area. I felt safe to venture out. My hard work on my recovery was paying off. My eldest child had faced terrible bullying at school and I had to take action to protect him. This fierce protection instinct mixed with my strong sense of social justice was the boost I really needed.

I still had no knowledge of my neurotype. I still felt like the odd one out but shrugged it off as being the kind of person that was an acquired taste. I wish I’d realised that the netball Mums were arseholes and I was not at fault and never had been. That the isolation I felt in the school community was again due to a lack of an inclusive environment. Something that still exists now.

As I stepped up my advocacy and met other autistic adults I realised I had found my people. I still thought I related better with them because I was parenting an autistic child. Remember I was seeing my psychiatrist regularly, a psychologist at least fortnightly and my mental health nurse. This clinical team as little as five years ago had no knowledge or experience of autistic females.

I began to question my own neurotype. As my child grew older and I felt more and more familiar with autistic adults I began to think I may be autistic. During this time I still grappled with depression. My anxiety was increasing and I’d also been diagnosed with c-PTSD.

As I started to self identify as an autistic person, I raised this with my psychiatrist. His first response was to poo poo this. I really had to self advocate. I explained the increasing numbers of women my age who were being diagnosed. I asked him to do some research. To his credit he did. He agreed I was autistic.

By this time my child was 18. We had raised him very much along the social model of disability. I felt angry about exposing deficits rather than scaffolding strengths. I found NDIS was as difficult to navigate as it was useful in supporting my son. This process saw me refusing to get a full diagnosis believing the knowledge of what level of autism I was would hurt me more than help me. This is a fight or flight response more linked to my mental illness than my autism.

I struggle to ascertain where my autism ends and my mental illness starts. Anxiety is most definitely a co-occurring condition. My paranoia is not. The hyper-vigilance I feel is not just from c-PTSD but also something I can expect as an autistic ADHD person.

I have this trifecta of co-occurring conditions that can all as stand alone diagnoses explain much of who I am, how I react and why I feel the way I feel. Yet combined I don’t know where one ends and where another begins.

I can at times be very capable of achieving amazing things. That does not mean I don’t pay a price for this. In between all the things I share publicly is the person who struggles so much and feels so much emotional pain that suicide is at the forefront of my mind. Let me assure you just because I think about it does not mean I’ll follow through. That is a legacy I will not leave my children. But thinking about it is painful and frightening.

To add to this is a lack of understanding around psychosocial and invisible disabilities. When I explain I feel unheard. When I explain I feel people are not open minded and in fact act defensively because I’ve asked for reasonable accommodations I’m the one who feels bad. Feeling bad for a disability really does suck. I get accommodating an invisible condition is difficult but why is it harder for me to receive reasonable accommodations, particularly when I’m prepared to wear the emotional labour to inform and educate. I know too well I’d be called out if I failed to acknowledge and accommodate physical/visible disabilities.

I don’t ask for accommodations to make anyone feel bad. I ask for accommodations to help me function in society. I’m just trying to self advocate and yet I feel punished. How unfair is it for me to be punished for a disability I can’t control.

I’m a hot mess of confusion trying to single out and identify what is autism, what is ADHD and what is my mental illness. I don’t think I’ll ever figure this out. I think they are so closely linked that trying to separate each one is like cutting off one of my limbs. They are all equally very much a part of me.

When I or a person with an invisible disability tries to explain this disability please understand we’re asking for support not pointing fingers.

Laura Lewis (c) 2021

Why Christmas is Hard when Routine is Important

For the first 50 years of my life I struggled with the end of the festive season. As I am becoming more familiar with my neurotype, I have been lowering my mask and becoming comfortable in my skin that is 100% autistic. I don’t carry autism around with me. It doesn’t just make things a challenge. I am learning how to honour every last autistic molecule in my body.

Transitioning has always been a big thing for me. I am coming to terms with the reason I arrive early to everything. Why I do practice runs to new places. My brain immerses itself so fully into my experiences that I need to carefully gather each thought and tuck it away safely, before beginning something new.

I no longer apologise for turning up early. I explain, inform and educate. This is a step in helping me with accessibility. If this can’t be catered for, I just leave. I have lived with an at times very debilitating mental illness for nine years with c-PTSD from trying to fit in.

The beauty of being a grumpy woman in her fifties is that I no longer attempt to placate other people who can’t deal with me. That’s their problem not mine. However the layers and layering of trauma has left scars that at the worst of my mental illness were almost mortal.

In an endeavour to stay well, to be present and to not ever try to fit in; I now unabashedly outwardly live a neurodiverse life.

So back to Christmas. It took about two weeks to put the tree up. It uses up many spoons, but, I love Christmas and I am ok with that.

In the ghosts of Christmases past, it was standard to have all the decorations and tree up well into February. I was lying in bed on Christmas Day night thinking about needing to transition back to a house with no festive decorations. I decided Boxing Day we would not turn the Christmas tree lights on. My husband took care of all the external lights and decorations.

The next couple of days I’ll slowly pack away any Christmas decorations that are not on the tree. There’s a lot! Wash all the napery and festive tea towels. Find homes for my Christmas presents. Even this has taken me months to do in the past.

Lastly we will tackle the tree. Last year I bought a Christmas tree storage bag. We don’t need to take the tree down. If fits in lights, decorations and all.

I kept some of the cardboard from the Bon Bons and my gifts. I am adding that to my hoard of art resources.

I write this to help myself process and put into practice measures that are necessary for my well-being. If anyone else reads this and it helps you with transitioning let me know.

I am trying to stop feeling bad about the way I take measures to help me live my life.

(C) Laura Lewis 2020

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


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