After working with pre-teens for many years, Mary is also the mum of a tween with ASD and ADHD, and uses her experience to help others.
1. Sleep: A Decent Night's Sleep? What's That?!
One of the biggest issues for parents of children with autism is exhaustion. It has long been acknowledged that people with autism produce less melatonin, the hormone responsible for regulating sleep patterns in animals and people, which results in them needing less sleep than most.
The result is, while the child may only need to sleep for three or four hours to feel entirely rested, the parents also have to get by on half the recommended amount of sleep on a daily basis—as they have to wake up with their child to ensure that they are safe.
This has long-term implications on their overall physical and mental health. Binge-watching the latest Netflix show isn't responsible for the bags under their eyes and look of exhaustion that you noticed on the school run; it is a result of long-term sleep deprivation. They are suffering, despite the smile on their face and the spring in their step.
2. Parents Must Educate the Educators
Every school in Britain has a SENDCo, or a Special Educational Needs and Disabilities Coordinator, but the fact of the matter is that funding in schools is not enough to allow every single teacher and teaching assistant to go on a special needs course.
The vast majority of teachers do their very best for every child in their care, but when you are teaching a class of 30 or more, it isn't always possible to notice every issue with every child. The task of ensuring that the teachers are aware that, for example, little Sally taps her foot at 115 beats per minute when she is very upset, or that James will become hyperactive and disruptive if he doesn't understand something, is down to the parent.
To make things worse, by the time that the teacher has got to grips with all of the child's quirks and triggers, as well as those of the rest of their class, SEND or not, the school year is all but over, and the child will be moving into a new class with a new teacher, and the whole cycle starts again.
3. Miracle Cures: In the Land of Make-Believe . . .
If you want to upset any special needs parent, just utter these two words: Miracle cure. In recent years, there has been a number of so-called "miracle cures" for autism, and they are all there to make money from people who want their child to have a happy, "normal" life.
They prey on parents who are utterly exhausted, who want nothing more than to be able to sleep for a whole night and take their little ones on a surprise day trip without the world ending. They demand money for their books, their DVDs, their dietary advice, their unique blend of essential oils, or their repackaged vitamin tablets. They promise that "your child, too, can be autism free within a year."
They may as well be selling fairy dust and magic carpets. These things don't work. All they do is raise the hopes of desperate parents, followed by anger and frustration when it becomes clear that they've been scammed.
4. Unsolicited Parenting: That Child Needs Spanking
Going out with an autistic child is a terrifying prospect, and one of the biggest challenges with that is dealing with meltdowns in public. Make no mistake, meltdowns happen. They can be violent, and they are often loud and obvious.
To the uninitiated, however, they look like a spoilt child having a temper tantrum. Phrases like "I'd give that boy a good spanking" and "I would never let my child act like that in public" do nothing but judge and belittle the parent. What people don't realise is that the child is entirely unable to regulate themselves during a meltdown, and so it is up to the parent to try to calm them to a point where they can respond.
Going out and managing stress and stimulus levels to a point where meltdowns don't happen often in public take time and practice, but the more judgemental comments a parent hears, the less they feel comfortable going out with their child, and the child is then unable to cope with regular activities such as shopping or going on a day trip, and we end up with a vicious circle that results in near-complete isolation, which is never a good thing.
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5. Dealing With Meltdowns, Meltdowns, Meltdowns
This is one of the most stressful things an autism parent has to contend with. As I have mentioned already, meltdowns can be violent, meltdowns can be loud, but, most of all, meltdowns are very obvious.
Many autism parents, myself included, have come away from their child's meltdown with cuts and bruises because they have been trying to restrain and calm them. The emotional impact is huge, and it can be impossible to predict when a meltdown will occur.
The best advice I've ever been able to find is for a parent to just weather the storm and let their child know that they are there for them, but that is cold comfort when the same parent is in the middle of a nightmarish day when their child has already had half a dozen violent meltdowns by lunchtime, and they're barely able to keep themselves together, never mind a child in crisis. At that point, nothing any website or leaflet says makes anything feel okay.
What Can I Do as a Parent to an Autistic Child?
- Things will be difficult. Allow yourself to accept that things will be difficult on a regular basis.
- Don't get caught up with the "supermum" parenting style that so many people with neurotypical children adopt on social media, because it's all hyperbole; I can all but guarantee you that their posts are designed to make themselves look better, as we live in an age where many believe that if you're not perfect, then you're not good enough.
- Make a note of the good moments, not just the bad. The more you focus on the highs in your life, the less important the lows will appear to be.
- Don't be afraid to ask for help. Sometimes you just need an hour to yourself to catch up on a bit of sleep or enjoy a hobby. There will be people around you that will be happy to watch your child for a short time, so ask them.
- Stick up for your child and their rights without being confrontational. I know how tempting it is to scream a few choice words at the old lady who has just told you that autism wasn't a thing in her day, but it really isn't worth it. She won't learn, but you can be the better person by kindly educating her ignorance.
- See a doctor. Between your child's therapy appointments, school meetings, plan reviews, and general checkups, it may feel as if you do nothing but attend appointments, but these appointments focus on your child, not on you. You need care and support as well, and your GP can point you in the right direction if they haven't done so already/
How Can I Help a Parent That Has an Autistic Child?
- Don't judge. They're doing their very best, even if it doesn't seem like they are making any progress. They know their child better than anyone, and they make certain choices for a reason. It is not your place to judge them.
- Be sincere when you offer to help. Words are easy; actions are not. If you have said that you will have their child for a few hours, then do it, and do it with the knowledge that this child is probably going to be confused about why they are with you and not their primary caregiver. This short period will give you an insight into how difficult it can be to navigate the spectrum and give you a greater appreciation for the difficulties autism parents face every day.
- Don't be hurt when plans are cancelled last minute. It really isn't anything personal, but if there has been a crisis, or even if your friend has just had a bad night and needs to stay at home and watch Disney films with their little one over and over again to get a bit of rest. It isn't about you; they need to look after themselves, too.
This content is accurate and true to the best of the author’s knowledge and is not meant to substitute for formal and individualized advice from a qualified professional.
Robert H Moore on January 26, 2020:
I communicate with a woman on Twitter who has a daughter with Autism. I want to understand more about what she is going through so I can provide meaningful replies to her tweets that won't seem uncaring or gruff in any manner at all. I'm a very sensitive man and I want to continue to stay friendly without causing her anymore stress then she is already experiencing. Her Husband an officer is in the Army and I am a Military Veteran and I was a member of a Military family as well. Our ages differ dramatically as I am 72 and she is 24.
Any insight you can provide to me would be priceless.
BrianEckels on July 13, 2017:
I myself am a parent with an autistic child. I know the meltdowns, I know the fears, and at times I too feel overwhelmed. This is why I myself have launched my own coaching business focused solely on helping the PARENT, and not so much focus on our children, because we parents feel alone at times. We feel we need to give up our dreams for them, when all we are doing is robbing them of a future too.
I know one thing that really helps is to find support, even if said support is online only. My wife and I both had alot of support where we previously lived but in our smaller community, it's just starting to become a thing here. Having friends can be tough too, but I want every parent to know that we are stronger because of our challenges. If I can rise to my dreams, so can you.