The Big A
Erm... Bish what?! It wasn't diagnosed in "your" day purely because of the lack of medical research. Autism was still present just not diagnosed. A friend of mine Gaynor, has recently been diagnosed as autistic. I'm sure she won't mind me sharing her age with you; Gaynor is 50 years old. Her whole life she has been autistic. Through the 70's, 80's and 90's, Gaynor was autistic. So the ignorant comments that autism is a millennial thing are false. When she was the bullied, unpopular, odd kid. When she struggled with friendships and relationships. Her diagnosis suddenly meant that her life, who she is and how she is- made sense. In comparison my daughter Dolly was flagged up as autistic at a very early age. For many girls this isn't the case. Dolly was diagnosed young for the simple fact that she is not (in medical terms) high functioning. The lower you are down the ASD spectrum, the easier you are to diagnose. A huge number of autistic girls ARE high functioning. They can mask behaviours, they can mimic, they can blend in. Sadly this means they can be overlooked just like Gaynor. How different would her life had been if she and everyone around her, would have known that actually she had a lifelong neurodevelopment disorder? She'll never know.
I remember when Dolly was 4 months old turning to my good friend Char and saying " There's something wrong with her. She's just not right." At 4 months old. I couldn't explain it or put it into words but as her mum, I knew.
Physically Dolly hit her milestones super quick, she was walking at 8 months but in other areas, we were behind. She didn't actually eat until she was 2 years old. Her first 2 years, she drank prescription milk only as she was allergic to both soya and dairy (food allergies are very common in autistic people). There was no physical or medical reason why she couldn't eat, she just didn't. She was always chronically constipated, she didn't play with toys but was forever moving, never sitting still. And she rarely cried. Some people would say "Wow! What a good baby! Lucky you!" but it was eerie. Even as she grew she stayed quiet. Speech was another milestone we missed; not coming in until much later. And with the speech came the ear piercing screams which we still get to this day. Of course I know what they mean now- anger, frustration, fear, sometimes pain. But usually frustration. Back then I had no idea why she was forev
er just screaming, sometimes smacking her head off the wall as she did so. I first reached out for help when she was 2. She had a meltdown in our local Tesco's that was so violent we were asked to leave the shop. Myself and my very small toddler were escorted from the premises by security. I booked an emergency doctors appointment and just broke down. She was a devil child, she was broken, I was failing as a mum! And I couldn't cope. I've heard a lot of parents experience with the diagnosis process and the majority have had it tough, really tough. Having to fight every single step of the way. I didn't have that. From that first appointment it just snowballed. Special education health visitors, Education psychologists, consultants, behavioural therapists, behavioural psychologists, physios, speech and language therapists- we saw them all. Appointment after appointment after appointment. Autism was mentioned straight away. It meant nothing to me as I refused to google it, choosing my usual path of ignorance. I was told Dolly had very masculine ASD traits in that she was violent, destructive (to herself, property and others) and as her speech grew- verbally abusive. Whilst all these appointments went on I was knackered, the professionals saw an hour snapshot of my life. In public Dolly couldn't keep her clothes on. She had no sense of danger, throwing herself off climbing frames, trying to constantly go into roads, touching hot things. And she was a runner; my God the kid could run. She had developed tics that lead her to constantly repeat inappropriate things in inappropriate places, echolalia (which still drives me mad by the way) no spacial awareness and felt able to touch anyone on any part of their body. She still hadn't any imagination so didn't play, unable to do puzzles meant for 12 month olds and with the screaming and daily meltdowns- life was tough. For all of us.
Then the big day came. We'd waited years for this. All the information and reports gathered, all the professionals in one place. Dolly was sent into the next room with a nurse whilst the rest of us spoke. There was a video feed so we could see her at all times. To prove a point (I don't know who to) the consultant had a strange man walk into Dolly's room, hold out his hand and ask her to go home and live with him. She took his hand and left without a backwards glance. My heart hurt so much I thought I was actually going to be sick. The meeting came to a close- Dolores is Autistic. Dolores has sensory processing disorder. Dolores has developmental delay. Dolores has learning difficulties. And the list went on and on and on.... (she has also since been diagnosed with a lot of physical problems including JHS , Chondromalacia Patellae and a blood disorder which will make having children in her future very difficult). Now I knew this. I'd been waiting for this but I cried like I have never cried before. Or will again probably. It was the end of the dreams I'd had for my girl. She wasn't going to have an easy life and it was my fault. To this day, I still feel it's my fault. There's no answer as to why it happens but until I die, I will feel guilt.
People say that she's lucky she is so pretty or oh! she doesn't look autistic! I don't know what an autistic person is meant to look like but she is one. She is an autistic child that will grow into an autistic adult who will be vulnerable mentally, physically, sexually, financially.
I'm sure you are thinking the same way I was, now that she is diagnosed she can get help, right? Wrong. The army of medical professionals disappear and in their place come charities, other parents of children with special needs. They are the only help or support you get and they are golden! But you still feel alone. Not all autistic people are rain man, Dolly has Learning difficulties and government cut backs mean that school's hands are tied and they can't really support your childs needs. Friends and family disappear as they can't cope and don't want your childs bad behaviour to influence theirs. It's a shit time. Sleep issues, food issues, physical issues (yes, autism also affects the body) being kicked, punched, slapped, spat at, belongings destroyed and the overwhelming sadness and heartbreak as your child has a meltdown because they cannot understand the world around them or use words to tell you.
But then one day I snapped myself out of it. No matter how bad I felt it was about my girl. So that's when I began to fight. Things they said she probably wouldn't learn, she did. Maybe years later than other children but she still learned them. And we will carry on learning together. School didn't help so I took her out. All I want for her is happiness. Statistics show 90% of all autistic people have anxiety and depression. More than half of that figure have suicidal thoughts at some point. So whilst some parents want a prestigious career and great wealth for their child's future, I just want mine to stay alive. Now the good days outweigh the bad days. She is 9 and has started to understand friendships; this gives
me hope one day that she will understand relationships. As exhausting as every day must be for her trying to process even a simple conversation, I'm determined that she will be happy and fulfilled. She can and WILL do anything she wants in life. My dreams for her didn't end, they just changed.
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