Mind-blowing and heartbreaking – living with autism

It’s been 10 years since Saskia was born, nine since her parents realised she had autism, seven since she was officially diagnosed and six since the family decided to go public on The Sunday Circle. Her mother, Audrey Komrij Jones shares some thoughts about the journey since then.

“A lot has changed since we first shared our story with the public. Whilst a lot has stayed the same. I wish I could have told myself a few things back then, as it may have made things easier. I would have been prepared.

Back in 2016, we thought that her condition was what used to be described as mild, but that soon changed to moderate. The likelihood is that Sas will never live an independent life, even if I hoped for better. Back then, I was naïve, and I thought that only good would come out of going public.

I didn’t think that trolls would take to the comments boards to tell me that it’s all my fault, like a particular mother did. Back then, I was more positive, and had more energy to fight. My mental health, attitude towards things and outlook on life have changed drastically. I’m writing this at a bit of a dark time, when my daughter’s self-harming and the autism are winning, when we feel broken as a family, and the pain and worry are stifling. Having experienced this over and over, I know that things will get better, they always do.

In an interview lately, I was asked what life is like as the carer of an autistic child. My reply was that its ups and downs. When you are going through a great period, it does not mean that this is it and that things going forward will be OK. The same goes for the bad periods, when nothing can calm my child down and meltdowns lead to her causing herself great physical pain. New issues come up, worse things happen, and better ones too. New skills are learnt, or she can suddenly come up with a one-liner which has us in stitches or speechless as to how she managed to come up with it.

As she grows, people empathise less

Nothing could have prepared me for this, and as my child gets older, the heartbreak intensifies. Watching everyone move on, grow up, and hit their milestones is tough when your child cannot even tell you how her day was, or be left alone for a minute. When I see old, retired couples, out with their disabled child, I see myself and my husband in a couple of decades, and whilst my heart is full of admiration for them, it breaks too.

I think that the thing I was most unprepared for was the fact that it is like we are sitting on a ticking time bomb. With every year that passes, and the taller she grows, the less compassion we get. I will never forget seeing a post online in which this mother had posted a photo of a man who had stolen her daughter’s pacifier, and warned the public about this ‘pervert’. The second I saw the photo, I knew exactly what was going on, and that he had an intellectual disability. It turned out I was right. The comments on the post showed me that I’m right to fear Sas growing up, as society does not realise that the cute disabled kids they throw a ‘jahasra’ or ‘xi hlew’ at, grow into adults and their condition does not go away. Right now, we get away with most things, like when I’m just not fast enough and she grabs a toy out of a child’s hand, and I’m always told that it’s OK when I hand it back. If she does this as an adult, people will be less kind.

Better therapy needed

I was unprepared for the fact that all these years later, the government has still not come up with a subsidy for therapy for all children. I still cannot understand this reluctance to invest in these children and to give them a chance.

I was unprepared for how jarring the phrase ‘you’re so strong!’ feels. I know people say this out of kindness. I know they mean well, and that they do admire the way I handle some things. The issue is that this was not a life choice. It was not something I decided to do. It was something that happened, through no fault of my own or my daughter’s, and the one thing I can do is support her and love her.

I was unprepared for the inability to switch off for a few seconds, wherever we go. People say that it is the same with most kids. It isn’t. Most kids eventually realise things are dangerous, or they know when they are doing something wrong. Sas doesn’t. She will just run across a street, or do other dangerous things and these are worries that keep me up at night.

I was unprepared for the sadness I felt when I realised that I will never be a grandmother. This is an odd one, because there is no guarantee that Sas would have gone on to have children in a neurotypical universe, but it still got to me when it hit. It’s OK now, I’ll have to settle for being the cool great aunt if my nephews have children.

Unprepared for the bad… and good

I was unprepared for the tears when she feels pain and cannot tell me what hurts. I was unprepared for how the fact that she is a pretty girl, makes people think that the situation is even sadder. Very often, we get comments like ‘Jahasra! But she’s so pretty!’. Like if she wasn’t pretty then the situation would be a bit more acceptable.

I was unprepared for the fact that I now need to live forever. I can never die, not even of old age, because I need to be around to make sure she is safe.

I was unprepared for the loneliness.

I was unprepared for the depression.

I was unprepared for the elation when she does something new.

I was unprepared for the fact that the cliché, ‘love needs no words’ was true. Sas is semi-verbal, in the sense that she can tell me what she wants, and ask me to do something, but that’s about it. Her senses are heightened, so she hears louder, speaks louder, notices things visually and olfactorily that we would not and certain fabrics can make her absolutely miserable. But this also means that she hugs harder and loves harder, and her hugs are legendary. She is more in every way.

I was unprepared for the fact that my daughter would be able to listen to a song for the first time and play it on the piano seconds later. I was unprepared for her beautiful singing voice. She did not get these skills from me or from her dad that’s for sure.

I was unprepared for the fact that moving from an invisible disability to a visible one was actually a bit better. Sas has more and more extreme stims as she is getting older. She flaps her hands like a bird that wants to fly away, and she makes some noises as she’s stimming. Before, when they were less frequent, people would stare in disgust when she would suddenly do it. Now, it’s like people do not want to look at us because they are aware that she’s different. I’m fine with that.

I was unprepared for the way she has made me a better person, who does not see things in black or white anymore and who feels real compassion for others.

I was unprepared for how she united us as a family and how strong the bond between the three of us is. We know we need each other, and we remember that every single day.

I was unprepared for the kindness people have shown. On some days, it’s obliterated by the nastiness some bullies dish out, but in general, people have been good and kind and want to help.

I am prepared for the long fight ahead. To fight for what is best for her, to make people understand and to make sure that she is happy and safe. That’s all I can do is a mother.”

What is autism?

Autism, or autism spectrum disorder (ASD), refers to a broad range of conditions characterised by challenges with social skills, repetitive behaviours, speech and nonverbal communication.  Because autism is a spectrum disorder, each person with autism has a distinct set of strengths and challenges. Signs of autism usually appear by age two or three, sometimes even earlier. Research shows that early intervention leads to positive outcomes later in life for people with autism.

For more information and support visit autismparentsassociation.com

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