The Autism Perplexity

 

This blog post is two years in the making. I've been writing my thoughts as a parent of an autistic teenager and my notes on my Iphone read like a cryptic crossword in The Times. Trying to decipher my thoughts and my difficulty in figuring out the way forward. If it wasn't for Anna Kennedy, we would be in a worse situation having no information on what autism issues Natalie was struggling with.

Autism is a puzzle I’ve needed to learn about. I did a test many years ago when my flatmate in Edinburgh was studying child psychology gave me a form to fill out asking various questions. She told told me according to the results I have autism and should speak to a Dr about it. It didn’t surprise me. I found a lot of people fake and trying to impress and lie about things which I’ve never understood. I’d be happy in my own company, climbing trees or walking in nature trails. Now I’m a mother, my youngest has autism and everything I thought I knew about parenthood went straight out the window.  My daughters are similar in a lot of ways but very different too. As a parent my job is to nurture my children. Having a child with autism is like season 1 episode 7 of Squid game. We can see the path ahead of us on the glass bridge but every step of the glass bridge is a risk. Would we be okay by what we do and have a happy child or will the next step forward collapse and then we pick ourselves up and start again? The end result we can see and know how to get there but it takes longer. We try our best to guide ourselves safely while people who aren’t on the journey are watching you and judging for their own entertainment.

The Diagnosis Tribulation

I naively assumed a regular doctor would have the ability to ask questions and diagnose her. This isn't the case and I'm still baffled why not. The local doctor told me it had to be the hospital, so he told me over the phone he would refer her to them. Due to coronavirus, Dr appointments are done over the phone in some cases. I waited eagerly and one day I got a letter telling me they couldn't deal with it so email a different department. I then emailed them to be told they were baffled why I was referred to them as all autism diagnosis has to be done by a school psychologist. So after various form filling by teachers I have an a online meeting next week with various people who can help Natalie.

Natalie would leave the TV on so her toys wouldn’t be lonely when she left the room. She would cry when a Disney movie ended, even when she enjoyed it. I would enquire why and said would tell me it’s because she would miss the princess once it finished. Her toy cars would be lined up in colour scheme. As a toddler before she could talk - she would toddle to get her changing Mat open the nappy box up and take out the wipes and fresh nappy then lie down on the mat for us to change her. We looked at each other shocked. So she was aware she needed her nappy changed and got stuff to do it!

Anyone who has a child with autism would understand that their ‘naughty’ behaviour didn’t mean they were naughty by not doing as she was told - their thought process was entirely different. I would ask why she would do things and to her it made sense. I saw her way of thinking was sometimes more advanced than others yet other times it was baffling. Quite simply, one diagnosis isn’t ‘one thing fits all!’ What some autistic children may have doesn’t mean every child is like that. It’s more Rain Man meets Forrest Gump meets Sheldon from Big Bang theory. (I’ve yet to see a movie or television series depicting a girl in this role- if anyone is aware of one, please tell me.) I got my child lots of craft items as she would create so many things from the glitter, paints, clay. Due to my disability, I thought of things to do in the home that would occupy her. She would always collect stones from a young age. I assumed it was something to do with Macapacca character in The Night Garden show on CBeebies. When we went out for walks, she always found heart shaped stones. We kept them in our garden and indeed took them with us when we moved. Natalie has a heart shaped birth mark on her neck. I told her she would find love where she went, as her heart stones collection got bigger.

Heart shaped birth mark

                           Some of the heart shaped stones Natalie would collect on our travels

                      Natalie made a heart shape in lockdown when it snowed.

The people who said they will help but don’t is getting tiresome. Progress isn’t made just by stating it will. If a child has a learning issue and she’s not in my care - what do schools have in place? A different teacher and different teaching methods in the same subjects so every class feels different and how to relate to them. A supply teacher would confuse her. My daughter got upset telling me she doesn’t understand what the teacher is teaching because the whiteboard stopped working. So the way she was being taught suddenly made no sense as it wasn’t clear. 

The windows open in class in winter when it was -0 degrees. I sent her with self-heating heatpacks. Sensory issues are the worst to deal with and adapt to. Being uncomfortable in clothes affects her behaviour. My first child was always smart and although my youngest could tie her school tie at the age of five - she never like the top button done up as it felt restricted. I would argue she had to look smart and presentable and she couldn’t understand why I made her that uncomfortable all day. Once my daughter went to The Ivy and I tried to find something comfortable yet smart so she wouldn’t look out of place. I told her that adapting to the setting you are in is worthwhile skill. It doesn’t always work but she got a new cotton top to wear. I told her once seated, to look at what people wore. She told me she was glad I got her the new top. She enjoyed her dining experience in comfort.

She was uncomfortable- she needed me to understand why she felt that way and why, as an adult, was I not helping her? It’s my duty to learn from her. Ignorance isn’t bliss. When adults listen to children and learn from them, we understand their thought patterns it opens life up. It frees them from the life they don’t understand and struggle with. Why are they so different? Natalie picked things up quickly in the right environment.

In first year of high school Natalie sang the new song she learned in lockdown, which was the periodic table. Then the numbers of Pi.

Natalie has so many friends that it surprised us. Socially awkward and bad communication skills but she would always make people feel important. I started a ‘rate your day’ text and asked her to rate her day out of five. She wouldn’t need to elaborate on it if she didn’t want to (although I’d ask her if I could help if she marked low) it let me monitor her if she was sad.

Sleep is something that helps her but her brain is always going so she wakes up at 3am every morning then starts school already tired. This is a hindrance for the autism community. I’ve tried sleep sprays, comfy nightwear, scents for the bedroom. I got her a Fitbit to monitor her sleep. It shocked me how little she gets. It's like she's in sync with the moon.

Natalie told me “I just want to finally be diagnosed with autism and ADHD so I know what’s wrong with me.” I replied there was nothing wrong with her. It’s the world that doesn’t make sense even to people who don't have autism! I assured her she won't always feel this way. Things were in place to get her diagnosed. 

We have watched her copy her big sister when they shared a room until Natalie started high school and we moved. Only at that moment, when she had her own room did we see the changes in her natural behaviour. Things that would annoy her like sounds, lights etc. Textures of some foods she doesn't like either. 

I’ve tirelessly read up and spoken to people who have excelled in knowledge of autism. Anna Kennedy, Giuliana Wheater, Kellie from Born Anxious and Siena Castellon have helped where they can by parting with their knowledge. These people are like guardian angels to my family. Also Dani Bowman from Dani Academy. These wonderful people have been leading the way in helping families deal with autism.

Natalie’s has received a lot of help from Anna Kennedy’s charity over the years. Natalie participated in Danimation through a scholarship from AKO, won Sugar Rush Bake off and Christmas Card Designs. I always tell my children to play to their strengths - not their weaknesses. There are always many ways to reach one destination.

Natalie's Press Releases for Christmas card design, Winning AKO Sugar Rush Bake Off Competition and Natalie on her Scholarship she was awarded from with Dani Academy in America.

Natalie's Digital Design on a Christmas card for Anna Kennedy Online.

Natalie's Chocolate cake she made. "The hearts were protecting the gummy bears on the cake."

Natalie is eager to create items to sell and raise funds for Annas Charity. She created the company Galaxy Ghost co. on Etsy.

 Link to Natalie's Galaxy Ghost co :Galaxy Ghost co.

UPDATE ON AUTISM DIAGNOSIS

My husband and I had an online meeting with the school and school psychologist who we were told had to look at the findings and determine if she had autism. After our meeting which Natalie attended for the end of it, we were told it now has to go to a department in the NHS which can take ages. It is absurd to all of us that just getting an autism diagnosis is so extremely long. All it needs is for our local GP to hear from the school and school psychologist surely? Why is it going through the NHS too? It is strange to think that so many people are going through school and may have to wait until they are adults before being diagnosed. How will this impact my daughter when she starts work experience or college? We need people in power who can make the change to this system that is failing our children.