Tag: NDIS

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

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.