No Time to Lose: Making Changes at Home While Waiting on an Autism Evaluation

We were finally moving forward. I had survived years in the dark not knowing the reason my child was struggling, no professional so far had been able to help, and it was only my own tenacity (and perhaps desperation) that had led me to learning of PDA. I was now confident that E was autistic, so it was time to pursue a diagnosis.

Soon after my PDA lightbulb moment, and subsequently deregistering E from public school, we happened to have a follow up appointment with the same child psychiatrist who had misguidedly recommended that using screen time as a reward for age appropriate behaviour would be a good way to manage E's challenging behaviour (she had also given other equally misconceived advice like how his school refusal would improve if I told him that school was the law and there was no other option). Her recommendations were not right for our family, but I was still eager to tell her what I had discovered about PDA and hear her professional opinion on what steps we should take next. Sadly, my belief in the system and my assumption that she would be interested to hear of my research was very naïve.

At the appointment, I excitedly shared the transformative knowledge I had gleaned since our last meeting. I handed the psychiatrist an info sheet and the most recently published review article on PDA and waited expectantly. She looked at me like I had three heads. She barely glanced at the paperwork. Clearly, she must not have been used to parents advocating in such a way for their children. She hadn't heard of PDA, didn't think E could be autistic because he made eye contact and could hold a conversation, and was very dismissive of my research because the profile is not in the DSM. She brushed aside my intuition. She brushed aside my research. She raised her eyebrows at my report that following her recommendations for stricter limits and consequences had only made thing worse. I felt very judged. In hindsight, I realize I was being gaslit. I was telling her that not only did Elias fit the PDA profile to a T, but I felt it in my soul that I was on to something important. She was not on board. When pressed, she did eventually give me several referrals for autism evaluations, but I could tell she thought it was pointless because E did not seem autistic to her. No matter, we were switching our focus to pursuing a diagnosis, so there was nothing more she could do for us and we parted ways. Good riddance, honestly. I was glad to move past her erroneous advice.

Armed with three phone numbers, I called each of the offices we had been referred to. The first was an autism research center at a local university, but they were not actually doing assessments at the time. Scratch that one off the list. The second was an experienced psychologist whose entire practice was assessments and she had a very long waiting list. It was August when I called and we were able to get an appointment for November. The third was for a developmental behavioural pediatrician and she too had a long waiting list, so we took the first appointment available, just before Christmas.

We now had the next season spanning ahead of us to wait. We were equipped with new knowledge, yes, but very little tangible support. No school team, no medical team (our family doctor had been sympathetic throughout our journey, but it wasn't his job to be an expert in atypical autism presentations), no family nearby. It felt lonely and daunting. I did have a wonderful therapist, thank goodness, who was fascinated by what I learned of PDA, helped me work through what I had learned each week, and was always in my corner. I have a handful of dear friends locally who have always been understanding of our situation and willing to help if needed. And I was grateful for the virtual support of the PDA parenting community. So, with autism evaluations booked, there was nothing left to do next but experiment with implementing PDA-friendly approaches in our home, and invent out of thin air ways to support ourselves in the process.

Prioritizing demands is one of the most important accommodations for PDA. The PDA nervous system response is cumulative, so every demand, no matter how big or small, is perceived as a threat, even if we do not see a response externally. Over time, the accumulation will bubble over the individual's threshold of tolerance and push them into meltdown. By the time I learned of PDA, E was in autistic burnout, being pushed into a state of meltdown multiple times a day; he could not handle any of the demands of daily life without becoming dysregulated because he had zero threshold of tolerance left. His six-and -half-year-old nervous system was operating under unsustainably high levels of baseline activation, and had been for at least two years. I remember breaking down in tears of grief and remorse and horrified guilt when I realized I had unknowingly pushed my son to the point of breakdown. Yes, I know as Maya Angelou's famous quote says, "Do the best you can until you know better. Then when you know better, do better." I did do the best I could pre-knowledge of PDA. I know that. And my best still wasn't enough to save my child the physical, emotional, and cognitive stress of burnout. I was ready to do whatever it took to get him well, and get our family out of crisis.

So, we were all in a place of raw, tender, broken existence. When my husband and I sat down to think about what was too hard for E and what demands we should proactively drop... we realized we needed to drop pretty much everything because it was all too hard. We would still hold boundaries to protect the emotional and physical safety of everyone in our home if E became aggressive, but we decided to let go of every other demand. We hoped that having as much autonomy as possible for a child his age would allow E to relax, feel safe, and begin to recover from burnout.

It worked. Almost instantly. The reduced tension in our home in the days after we radically lowered demands was palpable. We went from multiple aggressive meltdowns a day, to almost none. There was nothing for his nervous system to become activated about because we were making no demands. This level autonomy is what he needed to stabilize his nervous system.

When we dropped demands, E could access screens as much as he needed (which, yes, meant 12-15 hour days playing Minecraft or watching YouTube in a dark room for about two months, which, at the time, was what his body needed). He could choose what foods his body felt like eating and eat wherever he liked whenever he was hungry (I would serve him his same foods of plain carbs, popsicles, and salty snacks in his bedroom whenever he asked). We no longer insisted on or even reminded him about daily hygiene, again letting him listen to his body (he did not let us touch his hair for about six months, for example). We no longer had set "school time" or "outside time" or "quiet time," instead E's day could flow as he wished (because we decided to commit to unschooling at the same time as we dropped other demands, the period of deschooling and recovery went hand in hand for us). We relaxed our bedtime expectations (I have A LOT to say about our journey with sleep, but that will be a post for another day!). We didn't plan any activities for him out of the house and any social event was optional (I can probably count on one hand the times he went out that fall). If I hadn't had the support of the PDA parenting community, and my own therapist, I would have been much less confident in the changes we were making. The level of trust, respect, and autonomy we gave E was so different from standard parenting approaches, but it is what he needed.

We explained the changes to E by saying that we knew life had been feeling very hard lately, and we thought it might be because he has a very unique brain that needs a lot of freedom and choices to feel safe, much more so than most children, but we didn't understand that until very recently. We were going to try and support his brain by giving him as much autonomy as he needed to feel safe, as long as everyone else in the family was safe as well.

For our family, decreasing the level of nervous system activation in our home, especially E's aggression, was our top priority. We were particularly concerned about B's safety. I now understood the why behind E's behaviour and as an adult could handle it if he lashed out at me, but B shouldn't have to shoulder that responsibility. We had to accept that E did not have the skills to stay regulated around her right now, and that his levelling behaviour was not his fault, nor something he could control; it was the behavioural expression of his disability. At the same time, of course we could not let B be emotionally or physically hurt. So, we had to get creative about how to keep our children separated as much as possible.

We decided to invest in hiring a part-time nanny to be in our home, working together with me, for as many hours as we could afford while my husband was at work. E needed constant access to 1:1 coregulation with an adult, most often that meant someone playing video games with him in his room. But one-year-old B needed adult engagement, too, as well as opportunities to be out in the community even if her brother could not be right now. So, another adult in the home to help meet everyone's needs was our solution. We got a car seat for our nanny's car so she could take B on outings. E liked her too and they built a very sweet relationship over time by playing Minecraft together. Some days the nanny played with E while B and I had time together, or some days both kids were content doing their own thing, or they were asleep, or very attached to me, and she helped with household tasks. Having that extra person around not only lightened my load in terms of caring for the children and the house, but also acted as another nervous system for me to co-regulate with. Simply put, it was wonderful to have her around. I appreciated her company as much as the children did and we all became very fond of her! I'm so grateful we were able to make the choice to invest in that caregiving support when we needed it the most.

Later in the fall, we also started our toddler at a two morning a week half-day preschool program. Again, this was to give B an opportunity to expand her horizons outside our home, to give E even more of the focused 1:1 time he needed with me, and, every now and then, I even got a moment to myself! Hilariously, on B's first day of school, about an hour after drop off, E asked, "When is the baby coming home? I kind of miss her." Absence made the heart grow fonder, and the physical space was very good for their relationship. They began to play together and appreciate each other's company. Now, a year and half later, they have a much more typical sibling relationship and I am so grateful! Moreover, for me personally, with B at preschool, the schedule of pick ups and drop offs was soothing, and the chats with teachers and other parents were energizing. I had really missed being part of a school community.

Another need of my own that I had to get creative about meeting was my need for social interaction. When E was little, we did plenty of parent and tot activities to satisfy my extroverted side, but then the pandemic and E's burnout crisis coincided, so we basically saw no one for a year and a half. E's anxiety was so high, he rarely left the house, and this pattern continued through the fall of 2021. But, even if we couldn't go out, I knew I needed something regular on our calendar. I had a close friend who was also homeschooling at the time, and she was very aware of our situation. She and I decided to have a weekly playdate one morning a week where she would bring her children to play in our backyard. She and I got to chat, the kids got to play. There was no pressure for E to join us, usually he did for at least some of the time and truly enjoyed himself, sometimes he stayed in his room, sometimes he was still asleep, it didn't matter. Having a friend who totally understood our limitations, still wanted (and was available!) to spend time with us, and accepted whatever the day brought was crucial to my wellbeing.

Additionally, I was coming to accept that my time co-regulating with E was not just parenting, but caregiving. My son has a disability and was in a state of burnout. I was getting close to burnout, too. Holding myself to the expectations of typical mothers was not realistic because our situation was not at all typical. I needed to find ways to make life easier for myself so that when I wasn't caregiving, I could simply rest, or do things that would feed my very depleted soul. Convenience became the key aspect of my decision making; we signed up for Walmart+ so we could have unlimited grocery deliveries, we subscribed to the Hello Fresh meal kit service so my need for nourishing food could be met without the extra pressure of meal planning. I let go of the guilt for how much time on screens even the toddler was getting when I was on my own with the two children. Even though under normal circumstances I love to plan engaging activities, prepare delicious recipes from scratch, I enjoy my space to be clean, and I very much wanted the work on our house to progress, I lowered demands on myself about how many planned activities I set out for B, how much of our food would be homemade, how tidy the house was going to be, and how much I would be able to help with DIY projects. Before understanding PDA, I was pushing myself to do all.the.things, and subsequently feeling like a complete failure because I could not. I now had clarity that my parenting experience had gone so far beyond the norm, caring for my children was all encompassing. It made sense that I was struggling with my own mental health. I didn't feel guilty anymore for having symptoms of depression and anxiety, or for needing help and rest; my brain and body had been through a traumatic experience seeing my child struggle day after day for years, and it was just doing its best to protect me, telling me to slow down and tend to myself as much as I tended to my child. I deserved to have my needs met as much as E did. Everything else could wait.

As summer turned to fall and the seasons progressed, the changes we observed in E's behaviour were astonishing. As I said above, his aggressive meltdowns had decreased dramatically in just a few days, and even as time went on, when he did become dysregulated, because meltdowns are never completely unavoidable, his reactions were shorter and less violent. Plus, my learning about how to de-escalate for PDA was also helping us move through the big feelings and move on without shame. After the first few months of non-stop Minecraft, E started emerging from his bedroom more and more to join the family, and could do so without hurting anyone most of the time. We also realized that he was much more willing to go on errands or even on the occasional leisure outing if it included choice, novelty, and 1:1 coregulation with an adult.

This positive response to lowered demands was exactly the outcome we had hoped for. In just a few months, our home became a safer, more hospitable place. E was content devoting as much time as he liked to his deep interest, and I joined him in that world regularly to strengthen our connection and communication. With accommodations, he was slowly moving into the recovery phase of burnout. This was immense progress. The fact that PDA-friendly parenting approaches worked so well to calm E's nervous system, and help move our entire family out of crisis, further bolstered my belief that our son was PDA autistic. Next, it was time for our autism evaluations.

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