Part 2: Adult Diagnosis and What it Means
This Week’s Topic
This week, in Part 2, Kieran Rose and I will discuss late diagnosis and what it means. In Part 1 last week, we discussed 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.
If you missed it, please check out our 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.
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.
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.
He offers online learning about understanding autistic experiences for the public, as well as offering training for organizations. His course, The Inside of Autism, is a very popular course that parents from ICDL’s parent support group that I facilitate have attended and found extremely helpful.
Wondering about being neurodivergent
Kieran was diagnosed at age 23 then the past made so much sense to him, as he explained in this podcast. I asked Kieran, “What makes someone think they need to get a late diagnosis? Why does it help?” and told him the story that Dr. Kathy Platzman shared in this podcast about how if everyone in your family has the same type of neurodivergence, you don’t realize it until you dine with a different family over the holidays. I told Kieran how I started to wonder about my own neurodivergence when I began reading tweets of self-advocates and realizing that I was just like them and did the same things they described as a child or in the present.
I gave an example of how I tend to ruminate on all potential outcomes in a negative way, but that for me it is not about worrying. It’s rather just about feeling prepared in case they should happen. Kieran told me in the past that this is what neurodivergent people do and that it’s called ‘circumstance extrapolating’. Kieran says that we do it with positive things as well when we are happy and looking forward to something. You know you’re heading in to a certain situation so you extrapolate all the possible outcomes. It’s quite an autistic and ADHD thing to do, Kieran says.
My whole life everyone has always said to me, “Stop overthinking!” or “Stop overanalyzing!” Kieran says that this must have come from previous experiences where I have thought about something and it turned out to be true, so it’s kind of a rational response. When it gets more extreme it can lead to rejection sensitivity. If you are neurodivergent, you’re processing a lot more information than other people around you, so you need to think about all the possible outcomes to sort it out. When you’re monotropic and focusing on certain things and your interest and attention is driving you, you need to think through the logical steps.
Others, neurotypical folks, frame thinking like that as anxiety and overthinking, but it’s just my brain doing what it needs to do, Kieran explains. Calling it anxiety or overthinking is giving it a negative connotation, but you’re planning ahead. You’re looking for danger. You’re being hypervigilant, Kieran adds.
Watch what you ‘feed’ your child
What Kieran said to me stood out: that our past experiences fuel our current extrapolations. This means that what we do with our children feeds their experiences going forward. If we’re doing things that are invalidating who they are and make them feel like they’re a problem or that they have control over their behaviour, it’s feeding that experience, which is their trauma.
Kieran agrees and adds that if you think about all of the people who have unhealthy attitudes about their bodies and think negatively about their bodies, usually that stems from people making comments or jokes about their weight. Individually, each comment doesn’t make much of a difference, but collected over time, they give us messages and become our own unconscious thoughts.
Really, we’re talking about PTSD (Post Traumatic Stress Disorder) and cPTSD (Complex PTSD) on a minimal scale that cause reactions in us. When we have conversations about our children in front of them, our kids hear them–even when they’re not being derogatory about them.
Why get an adult diagnosis?
I asked Kieran how getting a diagnosis as an adult who didn’t have the same challenges as our children growing up, such as motor planning challenges and needing 1-on-1 support due to regulation issues at school, for instance, is helpful and what is the purpose of it? Kieran says that for many people, it is a validation. You don’t necessarily need the medical diagnosis. For some people, reading the experiences of adult autistics that resonate with you is enough to validate your past experiences, he shares. Kieran explains that for those who do get the formal diagnosis, it might be the first time in their life that they’ve been formally validated after a lifetime of being ignored or invalidated by others.
It’s about wanting to be recognized and be seen, and giving yourself permission to not blame yourself for everything that’s gone wrong in your life. That’s not to say that you then blame the diagnosis for what’s gone wrong in our life, but it helps you–if you’re guided in the correct way–to reframe everything so that you recognize that not everything was your fault, Kieran explains. Other people have taken part in you having an unhappy life, or difficulty at home or work, etc. It can take a lot of guilt away from yourself, but there is a lot of stress in getting the diagnosis as well because it is quite a process.
What a diagnosis does for you
On other levels, depending on your diagnosis, medication might be a route you can go down if you get diagnosed with ADHD, for example. The medication that you give people who are bipolar is effectively a bit of a tranquilizer to calm them, but for ADHD you need more of a stimulant to allow your brain to hyperfocus and be monotropic. There can be a stigma around medication, but there are many neurodivergences where medication can be an important tool.
Another part of getting a late diagnosis is that some people struggle with self-identifying. Going and getting that medical diagnosis can be a way of saying, “This is my badge which gives me permission to talk to others with this badge.” You shouldn’t have to have that badge to discuss it, Kieran emphasizes, but some people need that. It allows for new connections.
How can you compare an adult diagnosis to who our children are?
What about a child who had other disabilities, I ask Kieran. How can we compare someone who is a parent, like me, for instance, to a child who struggles with many challenges and needs a lot of support. How can we both be called, ‘autistic’?Kieran says that your child is not just one thing. The children we’re talking about here have other diagnoses which they’re never given because they’re never looked at and shoved under these umbrella labels, so they’re not supported in the right ways because nobody goes looking for the things they need support for. They just call it ‘autism’.
How can autistic adults help autistic children?
Kieran says that an adult of his age can offer a parent of a young child many things including that he used to be that child, even if not exactly the same. They share a lot of what’s going on. Kieran can speak now, but people only see snapshots of him at a conference or training. Outside of that snapshot, they don’t see what Kieran struggles with and how he masks to get through situations that are an enormous drain on him.
Regarding the example that I gave of a child struggling with motor planning, Kieran says that a dyspraxic person is a dyspraxic person whether they’re age 5 or 50, and there’s a reason why he doesn’t drive. This stuff doesn’t go away, but with scaffolding in place, these things don’t visibly has as much impact. Sometimes they are masked, and sometimes they are right in front of people but people don’t see them due to the lens they’re looking through. Due to what we’ve been told, having not been informed, and that people haven’t sat down with you and talked to you about this properly, we don’t see them, Kieran suggests.
Getting the support you need
It’s good to identify the ways in which children need support, Kieran says. I encouraged people to go back and listen to the previous podcast with Kieran where we talked about functioning labels. In talking about Executive Function and ADHD as Kieran mentioned earlier, I suggested that if I am diagnosed with ADHD, for instance, I don’t think I would need medication, personally, but I do need supportive tools. I gave an example of how I will often start to cook something then get absorbed in something else and completely forget until I burn it by accident. So I set a timer in order to not forget. That is a supportive tool for me.
Similarly, I set alarms on my calendar for everything so I don’t forget to pick up my child from school on time. I set events in my calendar so I don’t forget that I have a podcast recording scheduled, for instance. If not for these tools, these things could be a serious problem for me. Kieran says this brings us back to what we talked about in previous podcasts which is around disability. He said that I just described a disabled person who needs aids to do the things they need to do, even if I don’t see it that way. Both of us wear glasses. Without our glasses, we would be disabled, he explains.
It comes back to disability not being a dirty word, Kieran suggests. He continues that there are others who might have the same problem as me but also forget to set their calendar, so they might need medication to remember to do so, which is an extra level of support. It’s a neurodivergent experience–an ADHD example–that I gave, he insists. Someone looking in from the outside might say that I don’t need a diagnosis to be able to set a calendar, but that’s one tiny snapshot of a lot of different things, Kieran explains, and he points out that I keep repeating that I never struggled growing up, yet I just gave an example of a struggle.
I laughed and shared how I was always late for everything. Kieran says that the more I relate to other people’s experiences, the more memories like this will come back and I’ll realize that my childhood was not a neurotypical childhood and that I was not a neurotypical child who didn’t struggle. I was an ADHD or neurodivergent child who did struggle, but I had a supportive family around me who put things in place and had platforms and scaffolding around me and if any of those things were taken away–all of those things that neurodivergent children don’t need around them–my life would have been very different.
I share that I had a very hypervigilant mother who constantly was on top of me asking if I had any homework, and what I had to do. We laughed that without that I may have been a sludge on the floor, as Kieran put it. I also mentioned that as I have aged, I have noticed I struggle with needing more supports. Perhaps it was after having a child with his own support needs and the added the stress of having to remember everything I need to do for him, on top of my own needs that overwhelmed me. Kieran concurs that the older we get, we get more tired and when you’re living a neurodivergent existence, you’re carrying around the accumulated trauma and workload of masking. All of this adds to our weight we carry.
Kieran says that they used to say Executive Function was a core feature of Autism and ADHD, but he sees it as a symptom because it’s everywhere. Anyone who’s carrying stress experiences executive dysfunction. The more you meet your own needs as you age, the more control you’ll have, Kieran says. Kieran says that the bodies and brains of neurodivergent people burn out because we’re working so hard to sustain ourselves in a world where we’re surrounded by people whose needs are more met than ours.
We don’t know anything about aging and neurodivergence, Kieran says. There’s a lot of conversations, focus, and research that need to be had around the anecdotal correlation between neurodivergence and dementia. Masking and burnout play a major role in that, Kieran believes.
This week’s PRACTICE TIP:
Have you noticed that your child has many of your traits? Perhaps you were a lot like your child when you were young? Use this to fuel your connection with your child!
For example: When your child’s behaviour might trigger you, step back and take a breath. Put yourself in your child’s shoes and try to remember being in a similar situation when you were a child in order to empathize with what your child is going through. Be there for your child in a compassionate, understanding way and let them know you felt that way, too, when you were young and you’re there to be with them and help them if they need help.
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. Have a wonderful holiday season, and the podcast will be back in 2023.
Until next time, here’s to choosing play and experiencing joy everyday!
