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10 Things Autism Parents Worry About

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When you’re the parent of a child with autism, it can be difficult at times to prevent your mind from overthinking. When you get a moment of quiet, or a chance to slow down, you start worrying about all the challenges the future could bring. Usually, these thoughts like to pop into my head when I’m on the train home from work, or right as I’m trying to go to sleep. I can lay there for hours mulling these fears over in my mind, as once I start to think about them, I find it difficult to stop.

Most of them are things I took for granted before I became a dad. They’re not things I ever expected to have to worry about. I thought being a dad I’d “worry” about what school to send my sons to, what subjects they’d want to study as they got older. Would they want to go to university, what would they want to do as a career?

Instead, I feel we face a future that can be scary and unknown. Here are 10 things parents of children with autism sometimes worry about:

1. Will my child be able to speak?

Studies show that around 25 percent of people who are on the autism spectrum are nonverbal. Of the remaining 75 percent, many still have huge difficulties in communicating. I definitely took this for granted before I became a dad, and nearly 10 years later, I’m still waiting for one of my son’s to say his first word. And whilst my youngest son has said the odd word, they are few and far between. Finding an effective way for them both to be able to communicate is so important.

2. Will my child ever have a friend?

Of course my child will have a friend, all kids have friends right? Socializing can be incredibly difficult for people with autism, especially if being around others leads to an increase in anxiety, like it does for my son, Jude. Add in limited communication skills, and making a friend becomes a difficult task. With socializing being such a challenge, sometimes even just leaving the house can be a real accomplishment.

3. Are we following the right therapy?

A simple search of autism therapy on google produces 74 million results. There are so many theories and beliefs out there, how do you know you’re doing the right thing for your child? How long do you spend following a particular therapy before you can expect to see results? What if there’s a different therapy that will support them better? What if we should have given the last therapy longer and we quit too soon? It’s so hard to know if you’ve made the right decision.

4. How much longer can we all survive on such little sleep?

Often, people with autism can have sleep problems, and is as high as 80 percent within autistic children. This leads to lots of sleep deprived, exhausted parents and children. As we all know, a lack of sleep isn’t good for our health, and can make everyday life difficult, too. The irony is sometimes we worry about this and it keeps us awake when we have a chance to get some of the valuable sleep we need!

5. If someone else was their parent, would they be doing a better job than me?

This one torments me when I’m at my lowest ebb. When things are going wrong and your child is struggling, it’s easy to blame yourself. Maybe if someone else was their dad they would have pushed them harder. Maybe they’d be talking already if someone else was bringing them up.

6. When they finish school, what’s going to happen to them?

Are they going to be able to work? If they are, will anyone actually take the chance and employ them, or will they be discriminated against? If they’re not capable, then who’s going to look after them all day? Where are they going to go, what are they going to do? How am I going to be able to afford it all?

7. What if I got sick?

I can’t, end of it. This one just isn’t an option. I can just about provide them with the level of 1:1 care they both need now, if I was to get sick it just doesn’t bear thinking about. If I was to have a long-term illness, or end up in the hospital, I don’t know how we would survive.

8. If the meltdowns continue, how am I going to cope when he gets older, bigger and stronger.

Right now he’s only 9. What happens when he’s 21 and 6 foot tall? How do I stop him from seriously hurting himself?

9. What if my child gets sick and needs to go to the hospital?

We’ve barely managed a hospital stay for a few hours when he’s had a tooth out, but what if he had an accident? What if he fell and broke his leg? He wouldn’t understand having to stay on a hospital bed and not move. If he had a cast on his leg for months, with his sensory needs, how would he react?

10. What will happen when I die?

This is the big one that scares every parent I know. Who will look after them when we’re gone? We feel like we need to outlive our children as the options available for future care are so limited. If they are unable to live on their own and support themselves when they become an adult, then who is going to carry out that role when we die?

With fears like this running around in our minds, it’s all too easy for them to spiral out of control. The future seems so uncertain for our loved ones. The truth is, worrying about it just doesn’t help. All it does is make today more stressful. We can plan for the future by all means, and work hard on the small things that will make it brighter for our kids. But we need to try and focus on the here and now. Enjoy the good times that we have with our children, and figure out how to make the challenging times better.

Our own minds can be our own worst enemy. Sometimes we have to learn to shut them off and believe we’re doing a good job, that we’re doing the best we can. After all, that’s all we can ever do.

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Originally published: February 19, 2018
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