We’re coming up to April, Autism Awareness Month and it got me to thinking about why I blog.
Sometimes it is hard sitting here behind a computer screen. Putting myself out there open to criticism, open to scrutiny. I have no idea whether what I am posting is what you want to see, whether it helps, whether it helps you understand something you previously didn’t. Sometimes I feel very vulnerable sharing information. Sometimes responses can feel personal. Sometimes Facebook limits my reach so it feels like my hard work is wasted. Sometimes I wonder whether it is worth it. The reason I do it though is because I want to be the person I needed when I faced the biggest battle of my life so far. When I was most alone, when I had a mountain to climb and when I was scared.
As regular followers know my focus is girls (and women) on the spectrum because that is what I have the most experience in. It is also what the world has least experience in, in terms of autism.
Autistic females are serially misdiagnosed, under diagnosed and undiagnosed. They are misunderstood, dismissed, gas-lighted (or is gas-lit?) and belittled. They are accused of hypochondria and hysteria. So are their families. Sounds like something out of 18th century doesn’t it? Lack of understanding can sometimes lead to serious allegations. The consequences of which can be devastating.
We need to raise awareness and understanding about the ‘female’ presentation of autism so that there is no more lack of understanding and so no one else goes through the torture that my family has.
We were victims of a serious lack of understanding which led to dire consequences for us.
You see a lack of knowledge here in Scotland resulted in me being (falsely) accused of child abuse.
Yup, even though my daughter had an autism diagnosis from England, when we moved here the ‘professionals’ didn’t see it, so their first thought was parent blame. Not, ‘oh she must be diagnosed for a reason, let me try and understand’.
Instead the assumption was that I had a mental health condition and I was fabricating and exaggerating the challenges we faced. The implication was I had Munchausens Syndrome by Proxy (MSP) or Fabricated or Induced Illness (FII). For clarity, I do not.
Their patriarchal culture assumed I was wrong before even given a chance to prove myself. Their ignorance led them to assume I was mentally unstable.
The arrogance to dismiss their colleagues’ diagnosis still befuddles me. If I wasn’t so offended by the accusations I’d almost be ‘impressed’ at the level of cunning and manipulation they gave me credit for; I mean in their eyes I’d duped scores of professionals to manufacture a diagnosis. I mean really? When you think about it, its faintly ridiculous. However living through such accusations is far from ridiculous.
Where was the compassion, curiosity and desire to understand?
Where was the assumption that the family should be treated as intelligent and capable? Where was the respect? Where was the acknowledgement that as the old saying goes ‘Mum knows best’?
It is no wonder that parents are too scared to listen to their intuition these days, as when they do they are so readily dismissed.
The ‘professionals’ weren’t open to anything new, instead their approach was to mount a covert witch hunt all whilst being nice to me. It never occurred to them that I was right and they were wrong. They were deceptive and cunning. The embodiment of wolves in sheeps’ clothing.
Every detail of my life was scrutinised and pulled apart. The intimate details of private conversations were falsely reported and illegally shared along with other personal information. My most vulnerable moments were twisted and used against me. I was misquoted and attacked behind my back by people who behaved as though they were on our side.
It was like a bomb going off when I read the accusations. My heart was broken. Shrapnel shattered my world. All I have ever wanted to be was a mummy. From the age of three, when asked “what will you be when you grow up?” my answer was always “a mum”. And I am a good one. No, actually I’m a bloody good one. In fact, I am a great Mum. (I have to keep telling myself this as part of my recovery therapy!)
I adore my girls with all my heart and I am so proud of who they are. I am so proud of how hard they work, how kind they are and what great company they are. The fact they are as beautiful on the outside as they are inside is just a bonus.
As a family we work as a team to overcome the struggles. I’ve learnt anything that helps; from Makaton to massage, therapy exercises to teaching meditation, different parenting strategies to understanding different neurology from speaking to adult autists. It’s fair to say that I have a good handle on the subject and I am an expert in my children.
My credibility as a parent has been undermined by the accusations and my ability to effectively advocate for my girls has been impeded. But despite the added stress contributing to my own illnesses I am not quite broken. Nearly, but not completely.
Garnering the last thread of mental and emotional strength, I fought. I fought hard. It was hard. The fight nearly broke the last of me. But I succeeded and cleared my name.
Sadly the impact remains. We’re now a few years later and I still have PTSD (hence the therapy). The way I am viewed by some is still tainted. My trust in new professionals is impacted and I am on edge in every appointment. Part of me is still broken, part of me is still defended, part of me is still scared, in fact I’m terrified. I’m also outraged and I’m determined.
So that is why I do what I do. That is why I try and highlight the issues we face as a family with girls on the spectrum. And that is also why I remain anonymous; To protect my girls. It is also why it can be hard to sit here behind the screen wanting to help others.
Then you talk to me. You make a comment that makes me realise I am reaching someone. I have helped you, I have kept you company and made you feel less alone. You tell me about your children, your family and your story. I know then, I have made a difference in other little girls’ (childrens’) lives, in other mums’ (parents’) lives. I have made a difference.
We’re in this together and you help me as much as I ever intended to help you.
So from the bottom of my heart – Thank you!
So this is why autism awareness matters to me. It’s personal, it’s important. It’s for my girls. This is why I will keep raising the issues.
Until no more girls are missed, until no more families are tortured and blamed, we will tell our story. Because it makes a difference.