Part 1: To Whom Should Parents Listen?
This Week’s Topic
This week, in Part 1, Kieran Rose and I will discuss a number of topics around neurodiversity including who to listen to as parents when our child is diagnosed with so many opinions out there, and the balance between what we want as parents for our children and what our kids actually need. In Part 2 next week, we’ll discuss late diagnosis and what it means.
If you missed it, please check out our previous podcast which covered many topics including functioning labels and why they are not helpful, how people can be internalizers or externalizers, how Neurodivergence is in his infancy, Theory of Mind, and how context is so important when discussing anything.
This Week’s Guest
I’m pleased to welcome back autistic self-advocate, Kieran Rose, who is a published author, speaker, consultant, trainer, researcher, and neurodivergent educator in the United Kingdom who is the father of three neurodivergent children and has spoken with thousands of autistics over the last twenty years, both in a personal and professional context.
Kieran was also my guest on a two-part podcast last year with Dr. Virginia Spielmann where we discussed redefining the false autism narratives including many topics such as Kieran’s personal history and diagnosis, building on strengths, ableism, the social and medical models of disability, learning from autistic self-advocates, and much more.
There is No One Expert
With so many therapies available, what is the best course for parents? Who are the people offering these therapies? What do they know about autism? Kieran emphasizes that it comes back to context. There are many people out there who are just out there for your money, unfortunately. It’s difficult to advise parents who to listen to because everyone takes different things from different people. If we just think about autistic people for the moment, Kieran says, there are a number of self-advocates whom you can listen to. Kieran stresses that you need to think critically about whom you go to, about where you get your information from, and about what you take from people, too.
Kieran always says that he doesn’t want people to 100% agree with him. The work he does is informed by his professional career, his longstanding in the autistic community and the time he’s spent talking with other autistic people, from his own experience as an autistic person, and from his experience parenting autistic children, but he doesn’t know everything and doesn’t pretend to, he insists. He doesn’t like the word ‘expert’ because nobody knows everything about anything. So while he loves for people to listen to him, he doesn’t want people to agree with everything he says.
You can’t know everything because the autistic community is made up of millions of people, Kieran says. There is no one explanation of what autism is or what an autistic experience is. It’s about finding people with whom you relate, he offers. It’s about finding information that you find useful. It’s about finding people who are honest about what they know and don’t know. It’s about that critical thinking, he says. He sees a lot of autistic advocates who have a fan following as if they’re a celebrity. While Kieran has followers on social media because he is straight talking and knowledgable, it’s always about thinking critically and listening to multiple sources.
Kieran continues that you might listen to two different people say things that contradict each other and want to take what’s useful about what they both said and figure out what you can use and what you can disregard. It’s the same with therapies as well, he says. What’s useful and whose purpose does it serve, Kieran asks. We’ve discussed behavioural therapies and leading children and adults down a path of neuronormalcy, he continues, and insistence on doing things a certain way to fit in to society, when society isn’t that way and is supposed to be accepting. If you go to someone who is trying to change your child in some way to make it easier for them in the outside world, i.e., if we change your child in certain ways they’ll be accepted more, then they are saying that who your child is right now isn’t good enough, Kieran asserts.
Does your child need therapy?
Kieran says that especially in the United States when there is a diagnosis label, parents are told their children need many therapies, but they might not need any, he offers. They might just need a loving home where people are going to validate them, accept them for who they are, and encourage and enable them to be authentic, he suggests. So again, Kieran continues, it’s about thinking critically and not looking at people as experts, who might have some useful information but might not have useful information.
They might just need a loving home where people are going to validate them, accept them for who they are, and encourage and enable them to be authentic.
I pressed Kieran to elaborate on the topic of maybe not needing any therapy because so many parents–who may indeed be neurodivergent themselves–worry so much when their children don’t meet milestones and meltdown so much. They panic and go into ‘fixit’ mode. What does Kieran mean by ‘letting them be themselves’? Kieran says that one of his favourite books is the comedy science fiction novel, The Hitchhiker’s Guide to the Galaxy by Douglas Adams and on the front of the book are the words, “Don’t panic“. That needs to be drilled into every parent because you can’t predict the future, he insists. There are millions of autistic children in the world who didn’t speak as children who speak now as adults, he explains, and those who speak and communicate in other ways, whether it’s through AAC or sign language, etc.
Look at the Environment
Speech is not ‘the be all and end all’, Kieran states. It’s usually where the panic is for parents, along with meltdowns which are very visual, graphic, and distressing for not only the child, but also for the parents witnessing them. But that can change as well, Kieran offers, as children grow and learn to regulate–especially if you develop your understanding of what your child needs and help your child understand what they need as well. As they grow older, these things can dissipate as they get more control and autonomy over their lives and you recognize what distresses them and what doesn’t distress them, Kieran explains.
Kieran explains that we tend to focus on our children so much and forget that they do not exist in a vacuum. We exclude everything that’s going on around them. Sometimes when we’re a bit more informed, we think about the sensory environment, but often we do that in a very superficial way, Kieran suggests. We think about sensory systems in isolation when in fact, everything is sensory. So when we start to understand things more, we can start to recognize the impact that the environment has on our children–and not just sensory or the room they’re in, Kieran warns. The environment includes the people in the room and the emotional signals and behaviours of the people in the room. Everything gives off electrical energy and we interact with it.
Autistic people tend to have much higher aroused nervous systems, so are processing more information, Kieran continues. If you imagine all the signalling and electrical energy around them, autistic people are often emotional sponges. It’s a lot to process and can be overwhelming to process the emotional energy of others on top of their own emotions which autistics also struggle to interpret. They become more informed about themselves as they get older and emotionally develop in order to handle all this stuff, and they rely on their family and the people around to make those environments as lowly arousing as possible to help navigate this stuff, Kieran says.
When we’re not informed and panicking, people around us are telling us our kids shouldn’t behave like that, and we’re getting pressure from professionals, the child is feeling and experiencing all of this pressure as well, Kieran cautions. From the moment our children are born, the are invalidated, and people often don’t believe sensory experiences. From birth, there’s people in your face, bright lights, and numerous distressing sounds if you’re born in a hospital. Nobody anticipates that you’re going to struggle to interpret it all, Kieran says. As you grow older, you learn to express what you experience differently and you’re invalidated, he continues. Then, those who are fortunate enough to speak are shown that they don’t communicate appropriately! All of this is stigma, pressure, and stress is being applied to children, Kieran stresses.
As parents, it’s ideal to be informed of all of this and put things in place to mitigate it all. It’s important to make sure our children are informed as possible as well, that their sensory environments are rich with the sensory information they need, and that their school systems don’t invalidate them, Kieran offers. When we’re not informed, we don’t realize that all of this is going on with our children and all we see is distress. What we see is trauma expressing itself through meltdowns, Kieran explains, but we’re told it’s behavioural stuff which causes us to panic even more. So we take our kids to people who teach them how to mask that behaviour, which is not really bad behaviour in the first place; it’s distress and trauma, Kieran expresses.
What we need to do is look for positive sources of information, Kieran says. Seek out what’s useful and forget about social conformity. We need to find our own path–what works for us–and stick to it, he asserts. I expressed that I hope that parents will really ask themselves, “Am I actually doing this?” because there are many parents who believe they are doing this but they’ll talk about therapies they’re doing and say things like, “they’re doing so much better now” right in front of their kids.
I brought up that it’s tough for parents when our children do things like whip metal toy trains across the room. In the podcast I did with Dr. Virginia Spielmann about my son being a little scientist we discussed the type of play that my son was doing and while we want to give our kids the experience of being themselves, at the same time we don’t want our house destroyed. My basement has a zillion knicks in the wall from trains being thrown and scraped against it. Kieran explained that DIR/Floortime has the part of just getting down on the floor and playing with children, which is the most fun thing.
Kieran stressed that co-regulation is so important and said that it comes from doing what our kids do. If they’re a scientist, you are a scientist, too. Parallel play is the way that autistic children learn how to play, he emphasizes. They don’t learn by confronting other people and other people confronting them, Kieran explains. They learn by watching and observing, and by doing things while other people are doing them. They learn best, Kieran continues, and develop really strong relationships by having people sit down next to them and do their own thing while they’re playing. If they’re throwing the Thomas train, throw it with them.
Yes, you don’t want marks on your walls, but it’s just cosmetic. If it means that your child is going to grow up happy and mentally well, and develop in the way they need to develop, that means that you–as a parent–have done an amazing job, Kieran asserts. You brought a child into this world because you wanted them to grow up and be happy, but if you’re worried more about the cosmetics of your house than your child, it’s a problem. What else matters, he asks.
Next, I asked Kieran that even if we are on board with letting our child play in non-conventional ways, what about grandparents or extended family who might not be ok with trains being thrown across the room at their place? Kieran replies that you need grandma and grandpa on board. He has met many grandparents who are incredibly supportive and often recognize their own narratives in their grandchildren. Some will never be on board, and maybe that’s when you have to consider boundaries. You have to think about strong boundaries with people if they are insisting you conform in certain ways, Kieran adds.
Other people’s social rules don’t apply to Kieran. He said it’s taken him a very long time to get to that place. And, he acknowledges that it comes with privilege when I bring up cultural traditions that make it difficult for some parents to set boundaries. From a privileged white background we have an element of choice and flexibility that other cultures may not have, Kieran acknowledges. For some, there is resistance if you don’t conform, he continues. If you come from a culture that’s subjugated by another culture, it’s more impactful to make the choices to set boundaries. It’s difficult because the problem is the culture.
The Parent Journey
With some cultures putting such an emphasis on academics, for instance, it becomes more of a journey for the parent. It can be a very hard pill to swallow for some parents that their child might not be at the top of the class or succeed at academics. It’s amazing the journey our kids bring us on, and in fact, sometimes I think that this process is really more of a journey for parents than for our kids. Kieran nods in agreement. Some parents find it a struggle to face the realities of raising an autistic child.
I told Kieran the story of the concierge at my old building after my son’s diagnosis and how much he loved my son and was such a natural Floortimer with him. One day I was agonizing about my son’s future, describing all of the therapies we were doing and not knowing if we’re on the correct path. He looked at me and said that anything can happen any day and I should look at that beautiful child in front of me who is just fine! It really stuck with me and I’m grateful to him for that message. We can get so overwhelmed with what we should be doing that we forget to just enjoy and appreciate the child we have.
Kieran’s youngest was really struggling in the school system so they were headed towards taking him out of school. Kieran hates the term ‘school refuser’ and prefers the term ‘school-induced trauma’. He was speaking with a friend who said that you have to make a decision that’s right for RIGHT NOW. There will be an impact of that decision down the line, but that’s a decision for a later version of you. You have to make a decision for right now. Kieran and his wife pulled their youngest out of school and he’s been the happiest he’s ever been being home for over two years, thankfully.
Sometimes we’re so embedded in what we see as a problem that we can’t see what’s in front of us and what’s most important for the person. Think about the right now rather than ‘what ifs’ of the future, Kieran advises.
Find the ‘Why’
What we as parents want for our children and what they need might not be the same thing. I gave an example about many parents who are really concerned about teaching their child more words. Once they hear a few words, they want to teach them sentences. Or the parent who really wants their child to sit at the dinner table with the family. I say that you can teach them words to memorize but they’ll learn to communicate by the parent playing and communicating with them and pairing words with action and affect (i.e., W-A-A). Kieran summarizes that parents want their child to fit into social norms. He says it’s less important to think about what’s important than to think about why something is important.
When Kieran digs deeper with parents about this desire, he’ll hear things like, “Well, that’s what I did” or “That’s what expected.” But why, he asks. Why is it imperative to your life that they sit down and eat their dinner? Why do you have to sit together? The more rules you put in place, Kieran states, the harder it is. The more autonomy you give, the more someone will follow the rules you have in place, he suggests. Kieran never enforced that rule to have everyone sit at the table.
Him and his wife interact with his children in places that aren’t the dinner table. The two oldest children now tend to join Kieran and his wife at the table but they didn’t when they were younger. The youngest rarely joins them but when they do, it’s a celebration and something to enjoy. Kieran has no fond memories at all about sitting at the table on a hard, uncomfortable chair. He does have great memories of sitting together in the living room with a buffet on Boxing Day and enjoying his family’s company.
When we have neurodivergent children, we have to rip up the rule book and that’s really difficult for some people to do. But no matter how difficult it is, we still have to do it because that’s what our children need, and that’s more important than what we want.
Making the Tough Decisions
Parents often ask about a holiday dinner at a relative’s house and everybody sits at the table except your child (same goes for birthday parties). I often want to ask in return, “What’s your question? How do I get my child to act like everyone else?” I tend not to take the judgment from extended family personally anymore because they literally do not understand what I go through. Kieran says there are various ways you can look at it. He’ll now address the elephant in the room and say, “Who wants to ask me a question about why my child isn’t sitting at this table?” and talk about it.
Here is a child with a disability and this is their disability presenting itself. We talk about this stuff as ‘invisible disabilities’ but they’re not invisible and this is a way it’s presented, Kieran explains. Kieran would also question what you are getting out of that relationship with your family if they already know after you’ve explained, yet are still acting that way? You may have to put boundaries down. There might be relatives who don’t accept the disability and think your child is just being naughty. Many autistic people have to come to terms with creating boundaries. Is it better to conform?
The opposite happens, too, I add, when everyone in the family is invited except for you and your child. Sometimes it’s not intentional negativity, Kieran suggests. It’s people who don’t know better. If they aren’t invited, they don’t have to feel obligated, and it saves them the stress, the person might be thinking. It comes down to communication, Kieran says. Boundaries and communication are things that families are really bad at. Kieran reminds us that we don’t bring up children, we bring up adults. We want our children to have boundaries and agency, authenticity, and autonomy. Everyone struggles with relationships and boundaries because we weren’t ever taught them, he continues. It’s us as parents that stop our children from growing up into that because we weren’t taught it.
This week’s PRACTICE TIP:
This week let’s think about how we talk about our children in their presence.
For example: Are you using language like, “They’re doing so much better” or discussing their therapies with others in front of them? Let’s try to include our children in the conversation or if very young, at least not discuss what others might perceive as their challenges in front of them and instead focus on their strengths. Most importantly, let’s not panic and accept them for who they are and support their needs.
A huge thanks to Kieran Rose for sharing his knowledge and informed thoughts with us! I hope that you learned something valuable and will share it on Facebook or Twitter and feel free to share relevant experiences, questions, or comments in the Comments section below. Stay tuned for Part 2 next week where we’ll discuss adult diagnosis and what it means.
Until next time, here’s to choosing play and experiencing joy everyday!