Taking care of a child with autism can be demanding physically, emotionally, and psychologically, but we as parents need to realize that our duty to our children is to nurture and protect them from external and internal hazardous stimuli. The more time we take to care for and understand our children, the less demanding our roles become. I have a 20-year-old son who was diagnosed with autism at an early age, and I raised him as a single parent after my marital breakdown. At the age of 15, he started self-harming, and due to the impact of constantly hitting his ear, it became cauliflower-shaped. It was disheartening to watch him hit himself; every blow he gave himself was a personal torment to me. He was in school and I was working at the time, so I had little time to investigate the problem. It got so serious that he was excluded from school and was almost sanctioned for self-harming. This was rather alarming, as God would have it. On top of this, I was let go from my job of almost 12 years during the time I needed it most. It became an opportunity, however, to revisit what we were doing in his life. Here are some of the changes I made along with some guidelines:
- I stopped giving him yogurt every morning. I thought since I am allergic to milk, he might be allergic, too, and it reduced.
- I bought sensory lights (different types) for the home. They are not expensive; buy affordable ones.
- I used blackout curtains, trying as much as possible to reduce external environmental overload. It was no longer about getting something fanciful, but something effective.
- I ensured the TV volume was right and made sure what he viewed was appropriate.
- I stopped talking to him or asking him to stop when he was self-harming, as sometimes he was simply seeking attention, being stubborn, or being manipulative. Talking to a child who is self-harming can make it worse.
- I gave him painkillers to avert the impact of the blow.
- I stopped making long telephone conversations in front of him.
- I stopped giving him the harmonica and keyboard instruments the school gave him, as they hurt his ears (they made him worse).
- I provided computer apps to play the instruments instead.
- He suffered badly with PICA and loved eating dry leaves. I decided to give him plant-based food instead, like spinach and broccoli. It did minimize it.
- He loved eating tissues, so I stopped putting tissue in the toilet and cut some whenever he needed to use the toilet, and he completely stopped eating it.
- Sometimes it can be hormonal; if your child is going through puberty and in her menstrual cycle, please seek your doctor’s advice on how to minimize the impact of hormone changes.
- Show and tell your child you love him/her, even if he/she is nonverbal. The child understands.
- You can actually speak to your child when they are calm about the impact of self-harming. Don’t worry if he/she doesn’t respond, as your child does understand.
- Ensure your child is wearing suitable clothing, is neither too warm nor too cold, and is not hungry, as these can trigger self-harming episode.
- Try not to expose your child to any sexualized behavior — pay attention to what he/she sees, as your child is not able to filter or delete some inappropriate information.
- Please ensure you establish eye contact in every communication, as it shows your child that you have time for them, and they will always respond positively.
Understanding the Teenage Stage
During this stage, you should bear in mind that your child has special needs is still going through adolescence, and is transitioning into adulthood. We need to learn to respect that and ensure people around us accord the same respect, especially a younger sibling who may be cognitively high-functioning. I started by giving my son the opportunity to make choices. I always have his carers ask him what he would like to do, such as going out or staying indoors. I have noticed that they just ask him to get up and go, and when he gets out there, he becomes frustrated. When a child is older, you need to listen to his/her opinion, even down to clothing and meal choices. Please understand that all parents endure struggles while raising their children, so learn to adjust. It will alleviate your struggles. Learn to speak politely — words such as please, sorry, and thank you go a long way — and be sure to watch the tone of your voice. Autism does not debar hormonal, mind, or emotional functions — your child might not say much, but he/she retains a lot, which sometimes can spring up as self-harming episodes. Sometimes your child feels sorry for him/herself. It is normal to be frustrated by setbacks in life, but we need to jumpstart a joy of existence.
It is vital that we keep ourselves sane and our children safe. All these measures I mentioned above assisted in giving my son a decent life without putting himself in danger. These children are very loving and caring, so remember: what you give is what you get. Children with autism form attachments more than children without autism. Take out time to research, read, and explore so you can make a difference.
Freda McEwen is a single parent with two children, one aged 18 and one aged 20 with autism. She lives in London and worked for the Metropolitan Police Service for 11 years. She has a degree in Law LLB from West London University and a master’s degree in Law (LLM) from Southbank University. She is currently self-employed with the social services and formed an NGO for supporting carers. She is also a published author.
This article was featured in Issue 51 – School: Preparing Your Child for Transition