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

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