The importance of seeking autistic input in understanding your childs sensory experience

Content Note: this article discusses sensory experience from an Autistic perspective, and explains why listening to Autistic people is important when parenting Autistic children.

So often I see parents and carers of autistic children question behaviours they find confronting or difficult, and reaching out for help to know what to do about them. I honestly believe, after years of watching these conversations play out online and being involved in them in face to face situations, from raising my own neurodivergent children and mentoring autistic young people, and from my own life, that the answer usually has something to do with the childs sensory experience and unmet sensory needs. I’d like to try to offer some insights into this, and suggest something you can do to help. 

I didn’t realise until fairly recently in my life that not everyone has the same sensory experience of the world that I do.

Or that some peoples sensory experience of the world does not have a direct, immediate, complex and often overwhelming emotional impact on them. 

I feel sounds. I smell colours. I taste pain. I choose activities often based not only on what the practical benefit of the activity is, but also on the sensory experience it offers or threatens. 

As impractical as it may sound, I do live my life moving from one sensory experience to another. Quite honestly, I know it is not always practical for me to live this way, but I have no choice. The intensity of my sensory experience of the world means it is not optional, but merely a fact of my life. 

I can minimise the impact somewhat by staying home in my safe space, or by wearing sunglasses and noise cancelling headphones (among other strategies) when I’m out. 

But ultimately, a rich and intense sensory experience, and the resulting emotional response, is part of my every day that I just have to live with. 

I will, as much as possible, seek out pleasing sensory input as a way of balancing the unpleasant. This is much more desirable than simply avoiding as much input as I can. However processing pleasing sensory input is still tiring and results in needing a break from feeling so much. For this reason meltdowns and shut downs are inevitable past a certain point of exposure to life and it’s sensory requirements. 

For me shut down is more common. I melt down maybe once or twice a year. I shut down regularly.  It is involuntary when I push myself too far.  I can pre shut down rest if I catch myself in time. I can choose to allow myself to progress to shut down earlier than involuntarily if I am aware enough of my body’s signals.

I am an adult.

I’ve had a long time to observe myself and notice patterns of behaviour and responses to situations and stimuli. I have had opportunities to form theories and to run experiments to see whether I cope better or worse under different conditions and with different strategies. Children don’t have that wealth of knowledge and the benefit of time just yet. They also aren’t usually afforded the autonomy to experiment and figure out what works for them. 

I am fortunate as well to have someone in my life who wants to work with me in finding ways to make life easier and help me as I become increasingly able to live well, and who is of a mindset that allows them to be supportive, empower my experiments, listen to my feedback and observations, add their own, and loves me gently through all the difficulties of this process. A lot of children don’t have that. 

Now, to be clear, these comments are not a criticism of parents or professionals who support neurodivergent children. It is an acknowledgement that most people are told and believe that neurodivergence is problematic, normality is desirable, that the way to live well is found in conforming, and that the way to conforming is therapy. What I am saying is that people who want to support neurodivergent children are wanting to support children who do not have a typical experience of life, therefore an atypical approach to support is needed.  

This is information you don’t have access to if you are not listening to autistic advocates sharing their experiences of life and living, in the same way as I didn’t realise other peoples sensory experiences were not the same as mine! And when you don’t know something, you simply don’t know it, and you can’t act on it. 

You need to listen to autistic advocates.

If your child can’t articulate the details and intricacies of their sensory experience, where are you going to get that information? I certainly couldn’t explain it to anyone when I was a child. I still sometimes struggle to put it into words now as a 44 year old. 

The full benefits of a safe, loving and supportive person in my life are difficult to articulate, but I do know that having someone who will consistently and patiently wait and encourage my communication however it comes, and who will work with me to understand my experience, is changing my life. 

As a parent of, or person who cares for, an autistic child, you have the opportunity to be that person for your child. But you are going to need help to do it if you are not autistic yourself, because you do not share your childs sensory experience of the world or understand the real nature of the challenges they face, and they probably can’t tell you clearly yet. They will try to communicate their needs with you, but while they are young that may still be in the form of crying, yelling, and other behaviours deemed “challenging.” It is critical to your childs well being and yours to seek the input of your childs autistic community. 

Again, I am not criticising professionals who work with autistic children. They have their place and offer things your average autistic advocate doesn’t. But, it is important to understand that autistic advocates offer a perspective you can’t get anywhere else, and it is a perspective your child, as an autistic person, will relate to. 

Listening to autistic people should be high on your priority list.

It should be as high on your priority list as any other source of help you may seek in your quest to be a great parent to your wonderful autistic child. There are many autistic adults out there who offer their expertise through websites, Facebook groups and pages, and other means. Many do this selflessly and for free in what time they have around their other life commitments. Some of us do it as our jobs and need to be paid for our time. Either way the information shared is invaluable and essential for your childs wellbeing. 

The importance of understanding an autistic childs sensory experience can not be measured. It is as critical to meet their sensory needs as it is to meet any other physical need. When autistic people talk about this, please listen, and listen with an open mind and intent to learn and change when necessary.