NCL – Socha

“She never had any interest in children. She never wanted to play with toys or with other kids. She always had issues with sleep. She never wanted to eat. But she hit all her milestones. For the first seven years, her condition flew under the radar. Instead, I blamed myself. I was convinced that it was all my fault and that I was a failure as a parent. I couldn’t figure out what I was doing wrong. Her meltdowns were getting more and more aggressive to the point that I was actually afraid of her. I could see that the parenting for our only child was falling into pieces. The tipping point was when we went to Bray and she got ice cream. She said she wanted one with sprinkles and a certain type of syrup, but when I gave it to her it wasn’t the one, she wanted. She went a bit funny and she was asking me to get her another one. She didn’t even let me finish my sentence, the moment she heard me say the word ‘no’ she had a huge meltdown. She started screaming uncontrollably as if someone was about to take her life. She took off her shoes and socks and threw them away, and then began to run. She ran out to the road, right in front of the cars. We could barely chase her down. I could see everyone’s eyes turning. I felt that everyone in Bray was looking at us. She just couldn’t stop screaming and rolling around on the floor. The whole thing lasted about 5-10 minutes, but it felt like hours. I just kept thinking that this can’t be right! This just can’t be right! I never really knew anything about autism, but when she was finally diagnosed, I felt relieved. I’ve tortured myself so much with blame that I felt they had lifted weights off my shoulders. It took much longer to specify her diagnosis down to a very rare, special condition.”

“It’s called Pathological Demand Avoidance and it is exactly what it says. Avoiding everyday demands at all costs; otherwise, her anxiety kicks which can make her aggressive and quite violent. For example, she loves horse-riding, but most of the time we don’t make it there, because the process to get there is scattered with demands. Dressing up, and getting out of the house and travelling are steps that provoke anxiety in her. The only way of getting around anything is if she feels that she is in control of every step of the process. PDA is not recognised in Ireland. The only advice they could give to us was: ‘Avoid saying no and pick your battles.’ That’s it. Conventional approaches to support, parenting or teaching are ineffective with PDA. The lockdown was horrible as she just wouldn’t go out the door. I never knew what anxiety really meant until I saw her struggle. She asked me to take her mattress off her bed and she brought it into the sitting room and she just laid there for weeks. At some point, her mental health got so bad that she became suicidal. She got a knife from the drawer and tried to stab herself and her dad and she tried to throw herself off the balcony. Let me remind you that she was seven years old. In Crumlin Hospital, they told me that today is Friday afternoon and they don’t have a psychiatrist in until Monday and, because she is suicidal, all they can do is sedate her until Monday. The GP referred us to the mental health services who bounced us off saying that autistic children should go through disability services. In there, they told us that, because of the waiting list, she won’t be seen until 2026 at the earliest. I’ve had to realise that we will not get any help. It’s going to be up to her dad and me to care, support, advocate and keep her safe. She will never change and we don’t want her to be ‘fixed’. We just need more recognition and a little support. We are taking one day at a time because we are too afraid to think about our future.”

This post was highlighted by South Dublin Libraries as part of the ‘A Day in the Life’ Series.

‘A Day in the Life’ Series is a collaboration with South Dublin Libraries through the Dormant Account Funds. We created a series of interviews to get a glimpse into the lives of the people living in the North Clondalkin area. North Clondalkin Libraries will host the entire series as an exhibition in early 2022, as soon as restrictions allow.