Who better to ask for advice about autism than people who are actually autistic?
As a neurotypical parent to autistic children I can find it very hard to work out their needs because they can be things that are not necessarily instinctive to me. My 3 & 6 year olds both struggle with communication and are not generally able to explain their needs to me.
For this post I want to share information about being autistic from people who are autistic. Everyone is different but often we can struggle to understand these differences and sharing information is a great way to learn. It took me a long time to see that my eldest had sensory needs (he is a sensory seeker) and it had to be pointed out to me more than once. The more we communicate about differences the more it will help others to recognise them. Autism encompasses a huge spectrum and as such you can learn something new about autism everyday.
I have reached out to some of my favourite autistic voices and asked them:
What autistic insight would you like to share with neurotypical parents about being autistic that may help them understand their child’s needs?
Here are their answers:
“I would say the most important thing to appreciate is that our brains are wired differently to yours. There are numerous aspects of us that are fundamentally different to you – we may learn differently, we may experience the world differently, we may have different needs and this can be very hard to appreciate because autism is an invisible condition (that is, there are no visible autistic features).”
Author of “How to be Autistic“
“One thing I wish neurotypical parents of autistic children knew is that you are your child’s first and most important ally. It’s going to be really hard at times, and you’ll have to fight tooth and nail, and sometimes you’ll work so hard to get help and end up back where you started, but if you keep fighting (and it can be a lifelong fight), your child will always view you as the person they can trust the most, the person who stood up for them when nobody else did. We can’t always show our appreciation when we’re younger, because we don’t always understand what’s going on behind the scenes, but I know, from my experience, as I’ve grown up, I’m in awe of everything my mum did for me, and I wouldn’t be where I am without her. There’s no way I could ever repay her for her tenacity and for believing in me, even when it didn’t look like there was much to believe in. She’s my hero – but she’d argue differently, which I find hard to parse, because every time I’ve stood up, she’s been right behind me, cheering me on.”
“Perhaps the most difficult thing about being autistic is that the world is built with everyone else in mind. Primary schools are built with bright colours, noisy playgrounds and teachers springing lovely surprises on kids, because it’s assumed that all children like bright colours, noise and surprises. Even workplaces are built with the non-autistic workforce in mind, from the physical setup of offices to the backstabby office politics.
Despite our reputation for not being very perceptive, autistic children can absolutely tell if they’re the ones who don’t fit in, and if the environment around them suits other people but not them. And if opportunities for important conversations are missed, this can lead us to believe that we’re “supposed” to be isolated, or even that it’s our own fault for not matching the environment like everyone else does so naturally.”
Founder of Bristol Autism Support.
“Executive functioning struggles are real! Don’t assume that because your child is highly intelligent that tasks that appear ‘easy’ to you are manageable for him or her. When you look at something like getting dressed and break down all the parts of this activity from start to finish, there are quite a few! Even an activity with fewer steps, such as tooth brushing, can pose a problem if your child isn’t able to plan the steps required by themselves.
Please have patience with your child and help them to plan and organise the tasks that make up their day. Prepare and present a visual or written list of the steps needed to complete activities. This can be done by creating a schedule with pictures that you use every day, or writing out steps on a portable white board. It may require a great deal of time and patience before your child has mastered a daily routine but it will be worth it in the end.”
Actor and Youtuber at MaxiAspie
“I would say the key to understand Autism is to understand how it affects the person so you might not know everything about Autism and you probably never will but if you know how it affects your child that’s the main thing.”
Speaker and Vlogger
“I’d advise parents to please just remember that their child is still their child. Just because they have the label of autism, it doesn’t mean that’s all they have to them. I feel a lot of parents nowadays can read up on autism as there’s so much out there and think that every trait automatically applies to their child which isn’t true. The autism label is a guideline, not a rulebook. Love your child for who they are and get to understand their strengths and weaknesses that way”
“Becoming comfortable with who you are is massively important. Only when a person is at peace with who they are will they develop meaningful relationships and embark on the journey towards where they want to get to. Help your child to like themselves, highlight what they are good at, encourage them to do what they are good at, and follow opportunities or create them.”
Autism Ambassador and blogger.
“I would say that tuning in to the person on the autism spectrum is about trial and error we (as human beings) are all born with a clean slate and what happens as our brains and nervous systems develop, our environment, our development, identity and personality types grow from year to year.
My advice would be to understand the “pieces” of the child’s autism and how they work for example someone who has alexithymia is not being able to process your emotions in “real-time” or maybe aphasia (language processing disorder) in which the child struggles to get interpretive meaning from language, acknowledge styles of learning, growing identity and personality types in how they respond to the world around, let them know that failure is normal and that is how people become learned, tolerant and balanced.
Have a healthy balance between recognising the autism but not making it the single driver, the overall identifier because to be defined and by one thing means the child may miss out on other aspects of themselves regardless of describing adjectives we are all born as human beings.
My parents had no additional support with me as a child so what they done was try and tune in to my ways of interacting with the world they provided me with many opportunities to go walking in fields, swimming and cycling and encouraged me to use my imagination and get a sense of autonomy.”
“I’m not against therapies. Both my son and I (and other autistic family members) have benefited from various therapies, including music therapy, speech and language therapy and cognitive behavioural therapy. But there are some out there that claim to help you but are very damaging. If you have a strong stomach, look up chelation, MMS and hyperbaric oxygen therapy. These are pretty obviously cruel and abusive, but there are also others less obviously so. I’m not going to give you a long list of interventions to try and interventions to avoid. Instead, I just urge you to look around and think, and in particular to seek out the views of autistic people on their experiences.”
And let’s not forget about the kids who can communicate, here is an insight from Naomi aged 10.
We asked Naomi – ‘what would you want mums and dads of autistic children like you to know about people with autism? Her answer was:
“When we say no or our bodies say no then accept it because sometimes we can’t explain why but we have good reason.”
“Help us with things we struggle with but don’t help us with everything. We are autistic not babies”
Do you have an insight to share?
I hope you have found this post useful do let me know what you think in the comments below. If you are autistic yourself please add your autistic insight for neurotypical parents in the comments. You can read Loren Snow’s comments in his interview.
You may also be interested in my post from last year which was advice for parents of recently diagnosed children from autism bloggers.