Trauma and Triumph: Two Very Different Autism Evaluations

I've danced around finishing this post for a few weeks because reliving E's first autism assessment is hard for me. I stopped and started writing a few times, not knowing exactly where I wanted this to go and needing to be in the right headspace to properly relay such a heavy but important piece of my story. Finally, I felt the urge to write after seeing an Instagram post from a foster parenting account I enjoy following (many trauma-informed parenting approaches are also useful for PDAers, so there is more overlap than you might think in terms of useful content). This particular post was about the mixed feelings that can occur for a foster parent when a court rules TPR, or Termination of Parental Rights. Clearly, my family's situation is not the same as TPR, at all, but the mere fact that a post about foster care is something that I would ever be able to remotely relate to is very telling; I never in a million years thought my own parenting journey would involve any mention of Child Protective Services, but it does. Reading about TPR reminded me of all the worst case scenarios I envisioned when the psychologist who did E's first assessment told me that she was this close to reporting me to CPS. I was shocked, confused, angered, and, ultimately, traumatized by her threat of involving CPS in our situation. I don't pretend to understand the heaviness that is TPR or the intricacies of the foster care system, but I have had awful experiences of my own within many medical, educational, and mental health spaces; "the system" has failed us many times and blamed E's behaviour on my poor parenting over and over and over again. Plus, I fully recognize how privileged we are within those systems in terms of our race, language, education, financial status, and more; if a system designed to support families could fail us so terribly, imagine what could happen to complex children who don't have the luxury of two parents with the time, energy, experience, and confidence to intensely research and advocate for their child? It breaks my heart to think what might have happened to E had he been born in a different family. It breaks my heart to think of all the other E's out there who are misunderstood and misdiagnosed, their families in crisis with their child while also dealing with who knows how many other layers of complexity in their lives. I never imagined parenting could be as messy as it has been for us, and yet I know that many families struggle even more than we have. This whole experience has certainly given me compassion for all parties involved in the chaotic, troubled family systems that warrant a CPS investigation. My family was this close to being one of them.

In mid-November 2021, after recognizing the traits of the PDA profile of austism in our son and making major changes at home to support him, it was finally time for our long awaited psychological assessment. At home, with accommodations, E was showing signs of moving past the worst of his burnout crisis; most notably, he was no longer melting down and becoming violent multiple times a day. Radically lowering demands had increased his threshold of tolerance enough that threat response was not being triggered at every turn, thank goodness, but he was still struggling to access basic needs like sleep, food, and toileting, and activities outside the home could still cause extreme anxiety. We were still eager to find the right professional support.

The morning of the evaluation, I kept everything as low demand as possible to keep E regulated. No suggestions about changing clothes, brushing teeth, or any of the daily demands that might set him over the edge. He had in the past refused to leave the house for appointments or had major meltdowns in medical settings, but I knew this appointment was too important to risk having to reschedule, so we needed to get there in one piece. Novelty often gives E's brain enough of a dopamine kick to override his threat response, so I suggested we leave a bit early and get breakfast from McDonald's on the way. That was enough to get us in the car and moving without a fuss. We went through the drive through and then had a car picnic in the parking lot of the psychologist's office. He sat in the front seat and we chatted about Minecraft while enjoying our McMuffins.

We kept up our lively discussion about his special interest in the waiting room. I knew he was getting activated because he was pacing in circles as we talked, eventually getting quieter, sucking his thumb, holding his lovey, crawling under the side tables, into my lap, interchangeably burrowing or butting his head against my chest. This would be a difficult day for him, too, I knew. When the clinical psychologist came out to greet us, E was able to exchange some pleasantries with her and she led us back to her office. She had a graduate student who would be doing the assessments with E in an adjoining room while she and I spoke next door. E was reticent to go in alone, but he eventually did agree. We left the door open between the two rooms and he came in and out quite a few times. I could hear the well-meaning intern trying to cajole E into cooperating and staying focused with stickers and promises of picking something from the prize drawer at the end of the appointment and I just hoped E could hold it together enough to get through the needed assessments, but also not mask so much that he appeared neurotypical. In the end it was somewhere in the middle.

While E worked next door with the grad student, the psychologist and I completed the parent interview. In addition to filling in all the standard intake paperwork, I had also sent information on PDA in advance of our appointment. Encouragingly, the psychologist had actually heard of PDA and recently read a book on the subject. I was momentarily pleased because this was a more promising start than I had been expecting - she had heard of PDA! However, that is where the positivity ended because in the next breath she told me whether or not he was PDA was of no consequence because she could not diagnose E as autistic; he had no trouble making eye contact or conversing with her, therefore, he was not autistic. She told me it would be pointless to do the autism-specific portion of the assessment because she could not diagnose him as such, so they wouldn't administer that part of the evaluation. Unfortunately, I had heard from many other families that it was not uncommon to receive this type of response, so I wasn't completely surprised. I nodded and said I understood. If I knew then all that I know now, I would have been a very different advocate for my son that day. Instead, I respected her professional opinion and didn't argue with her decision. I was still curious to see what else we might learn from the evaluation and what support she could offer.

In our interview, I was completely honest about how challenging life had been for us. I had no reason not to be open with her; I had never before had any interactions with any professional that would make me wary to share the intensity of our struggles. E popped in and out from the evaluation room from time to time, eventually reaching his limit after about an hour. He couldn't finish the entire assessment, but she said they had enough to work with and we could end it there. By then he was starting to get aggressive with me and saying he wanted to leave. She told him he couldn't treat me like that in her office and if he wanted to pick a prize from the drawer, he had to stop hitting and kicking. He did. He picked a prize. She walked us out and I scheduled a time to come back on my own to hear her report. Phew. We had made it through the assessment and they had enough information to make a report. Success. I felt confident that this meant progress.

I returned for the follow up appointment in early Decemeber, so eager to hear the psychologist's findings. I could never have guessed I was sitting down for what would become the most traumatizing hour of my life.

This is how she began our session, "Now, before we get started with the official report, I wanted to let you know that there were two concerns that arose in our interview that made me seriously consider making a call to CPS."

My mind went blank. "CPS?" I echoed.

"Yes. CPS. I didn't call, in the end, because I don't think CPS would be helpful for a family like yours... But I could have. The concerns are there. If you continue on the trajectory you are on, parenting the way you are, someone someday will report you."

I said nothing. I was in shock.

She continued. "The first report I could have made would have been for neglect. The state of E's matted hair and what you told me about his lack of hygiene overall can be considered neglect."

I said nothing as I absorbed what she was saying. Her words are etched into my mind. So is her body language as she sat in her swivel chair across from me. And the pattern on the couch upholstery. And the outfit I had on that day. And the layout of her office. The knickknacks on her shelves. Everything about that moment is visceral.

She went on. "The second thing I was concerned about is the level of aggression of E towards your daughter. I have concerns about the home being an unsafe place for her to live because of his behaviour."

At this point I felt the hot tears begin to well up inside me. My chin started to shake.

"The only reason I didn't report my concerns about safety is because you told me you had hired a nanny to help keep the children separated as much as possible. If not for that, I would have called."

Tears were streaming down my cheeks at this point. As she passed me a box of tissues I choked out the words, "That's the worst thing anyone has ever said me."

"I know," she replied. "I know."

She let me catch my breath before we moved on, but I cried on and off throughout the remainder of the appointment. How could I not?! She had basically just told me my worst fear - that I was an unfit mother who was failing my children.

She went on to tell me that in her career she had seen two other cases of children who struggled with aggression as much as E did. She had made the same recommendations to those families as she was going to make to me and both the children were now in their late teens and doing "fine." She could not diagnose E as autistic, as we had discussed, but she recognized he did have a very difficult temperament (much like her own now grown daughter, apparently, whom she shared several anecdotes about, none of which seemed to come anywhere close to level of challenges we were facing, but she was at least trying to be sympathetic, I think). In her opinion, just like the first psychiatrist, what E needed was firmer limits and consequences. He had to learn that his behaviour was inappropriate and would no longer be tolerated. We could not continue to let the whims of a 6-year-old run our household.

At this point I already knew her approach would never work for us. She clearly hadn't truly heard a thing I said and was stuck in her own, backwards beliefs about rewards and consequences and control, with very little insight into the paradigm shift currently going on in her field, away from behavioural strategies and towards treatment based in neuroscience and compassion and relationships. But none of those thoughts could form coherently in my head in that moment. Instead, since my own nervous response is primarily one of fawning, I spent the rest of the time politely nodding and smiling and mmmhmming my way through the appointment for survival.

To improve E's behaviour, her recommendation was to have a third adult in the home 24/7 for a short period while we ushered in this new era of rewards and consequences. It would likely take several weeks for E to learn that this is the way things would be from now on, so we would have to stand firm with our limits in the face of his tirades. We would focus on aggression, sleep, and hygiene first. One adult would be with E, enforcing the new rules. One person would be with B. One person would rest. It would be a very difficult few weeks, she conceded. Because of this, she would also offer to continue meeting with my husband and me for family therapy sessions to coach us through the process, which she made clear she doesn't usually do anymore, her practice is now purely assessments, but we were clearly in such trouble (E was in the top three worst behaved children she had ever seen in her career, if you recall) that she would make an exception so we could continue to enjoy her expertise. I remember hearing myself thanking her for offering this to us, while in my head knowing there was no way I would ever work with her ever again. I have no doubt that she thought she was doing what was best for everyone, and in her experience this strict authoritarian approach to aggressive behaviour may indeed have worked to quell the outbursts of previous children she had worked with, but at what cost? What about the relationships in those families? The trust? The connection? The missed underlying diagnoses? The neurobiological differences within the children's brains that made them perceive severe threat in their environment and react accordingly?

Officially, she diagnosed E with Disruptive Mood Dysregulation Disorder (DMDD). When I read the criteria later, I didn't think it fit; his mood between the outbursts was not disruptive, he was sweet and loving and bright and wonderful. I just knew there was more going on underneath the surface to cause his explosions. I soon learned that DMDD (along with Oppositional Defiance Disorder) is a common misdiagnosis for PDA. Moreover, leading child psychologists, like Dr. Mona Delahooke, have argued that both ODD and DMDD are problematic diagnoses because they focus on the child's behaviour and not the underlying reasons for why that child might be struggling.

Interestingly, one useful piece of data to come out of an otherwise awful experience, was E's cognitive test scores. We always knew he was bright, but his IQ scores were in the 97th percentile, with his verbal reasoning capabilities especially high.

So, my people pleasing self left that appointment thanking the psychologist for her time and booking my husband and me a return appointment for the new year (which I would later call and cancel, smugly telling the front desk staff to please pass on the message that E had been diagnosed as autistic by another professional so we were going another route for treatment and would not be needing to work with their office anymore).

I cried the entire drive home and broke down even more when I got in the door. My husband was home with our nanny and both children (we still were not at a place where we could leave anyone else alone with them both at the same time, truthfully, we still aren't). My husband and our amazing caregiver were shocked by what I told them of the report and instantly reassured me I was not at all a terrible mother. They both offered hugs and warm words while I broke down at the kitchen table. They told me that for the psychologist to think that CPS needed to be involved was simply outrageous. These sentiments were echoed by the close family and friends I reached out to afterwards to share about the day. Everyone told me the psychologist was obtuse, asinine. How could she have the audacity to call me neglectful after everything I was doing to support my child? In the words of my dear sister, f*** that b****. How dare she judge my parenting and blame me for E's behaviour. How dare she.

Fast forward a few weeks later and it was time for our second autism evaluation, this time with a physician, a developmental-behavioural pediatrician. It was a few days before Christmas and my dad and his wife happened to be in town to spend the holiday with us, so my husband, E and I went to the appointment together while B stayed home with Papa and Nonna.

The experience at the developmental pediatrician's office could not have been more different than our first assessment. The doctor chatted with the three of us for a while, assessing E as she went along. She brought down the DSM-5 and went through criteria for ASD, noting more than enough evidence to satisfy her that he did indeed meet the criteria for a Level 1 autism diagnosis. Hallelujah! She hadn't heard of PDA prior to me sharing my research, but in the end it didn't matter because she recognized him as autistic regardless. It was so incredibly validating. In the span of an hour, we had a diagnosis, a prescription for an anti anxiety medication, and referrals for three different therapies. It was a celebratory event for the whole family. We got ice cream on the way home and couldn't wait to share the good news with everyone. E had an autism diagnosis! We had found a supportive and well-informed medical team! After two and a half years of confusion and chaos, we finally had some official answers and a path forward. It was a Merry Christmas indeed, and 2022 would be a new year full of possibilities.

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