My hope is that this blog serves as a cautionary tale to other young helping professionals that come in to the autism field. I hope that others may avoid some of these early career inadequacies because they affect real people.
By Jenny Palmiotto
Everyone has had those moments where they look back on their life and think, ‘If only I knew then what I know now, I would have done it differently.’ We all shift throughout our lifespan with changes in our perspectives, values, and beliefs. The Art of Autism has invited the autism community to share about these humanistic shifts in a series of blogs called The Autism Shift.
In order to recognize the power of a transformative shift, first one must acknowledge the previous state of being. My autism shift is a story of grassroots. I was an ordinary direct therapist running behavioral programs in 2001 when I started to notice the inadequacies within my field. Being a naïve 22 year old, I was certain that these inadequacies were temporary and that great change was on the horizon. However 15 years later, the cultural shifts within the autism community were not imminent or seismic by any stretch of the imagination.
Back then, I was a recent college graduate full of moxie and determined to make a positive difference. Regretfully, I might have actually done the opposite. My hope is that this blog serves as a cautionary tale to other young helping professionals that come in to the autism field. I hope that others may avoid some of these early career inadequacies because they affect real people.
If you knew me back in 2002 when I was transforming from child to adult, you might remember how elated I was when I got my first real promotion at my first real job. You probably already knew that I loved kids and I wanted to help yours. After one year in the direct care position I was advanced to supervisor. I took this advancement without question. With the high turn over rates within the field, a year was considered a long time. In hindsight, I really hadn’t mastered basic clinical skills and had no business taking that promotion. But there I was, at the ripe old age of 23, managing your child’s treatment and sitting you down for parent trainings. Sometimes I cringe, other times I giggle about what my training must have sounded like to you. Never would a bunch of behavioral strategies yield the type of experiences you longed for with your children!
I thought my training and one year of experience was enough. I didn’t understanding that no amount of training could replace the experience of being a mother. Back then, when parents asked me the question, “do you have children of your own?” I issued generic responses taught to me by my superiors. I used metaphors such as, the heart surgeon not needing to know what a heart attack felt like to be able to treat it. I tried to convince people I was credible with my Bachelor’s of Art degree in psychology. Looking back, I realized I sidestepped the main issue. Instead, I should’ve listened to the question and recognized what the concern was really about…. “Can I trust you with my child?” “Do you know how important she or he is to me?” I wish I listened to what you were really saying.
I preached to you about consistency, consistency, consistency. With the passage of time and two children of my own, consistency is not my main goal of parenting. Some days I come home from work and have the energy and presence to paint a birdhouse with my children. Other days, Mickey Mouse Clubhouse does the job of babysitter. Back then I didn’t get it. I wish somebody would have politely told me I was full of sh*t. I wish someone would’ve told me the concept of behavioral consistency is a poor substitute for more important human experiences like the parent-child connection, the ability to attune to your child and show him or her the meaningful constant in their life is your love.
In my new role as supervisor, I brought worksheets and Powerpoints to educate you. We sat at your kitchen table as I provided information on topic such as sleep. I set up behavioral programs and rewards chart for children sleeping in their own beds. I wonder if you could tell that I was judging you for having your six-year-old in your bed? With no lived experience, I shared what the textbooks said about sleep hygiene. Now, I look back at these conversations and shudder in embarrassment. Long gone are the days that I will counsel on sleep without being requested to do so. And when I do my message is simple…get as much sleep as you possible can; however you can do it.
But even before that promotion to supervisor, I saw problems with what I was doing. I just wasn’t sure how to change it.
I knew after my week of training at the agency I worked for that I couldn’t do ABA, PRT, DIR Floortime, DTT, handwriting without tears, Touch math, play therapy, and a host of other therapeutic interventions and administrative duties that were covered across a 40 hours. Yet, us newbie direct therapist said we were “trained” and we went to work with your child. I didn’t know what I was doing, but I did it anyway. Little did I know that it would take me a decade to become not only competent, but also proficient in a therapy (RDI) that fits my values.
In my first years as a direct therapist, I thought the goal for your child was to be “normal.” Even worse, I didn’t ask ‘why’ when your child exhibited “behaviors.” I was trained to stop the “behaviors” at all costs. Don’t question, just follow the treatment plan. I gave your child an M&M for “quiet hands.” My deepest regrets for saying this demeaning phrase even once, let alone hundreds of times. It sends shivers up my spine when I hear these words. I hate those words. They are words that other.
When things felt wrong, like keeping a two-year-old at table time, unimportant such as drilling colors, or I just plain weird like asking the same question 10 times, I did it anyway. I followed the status quo. I was told that this was the very best way to help children with autism. It sure didn’t feel like a dignified and humanistic way of treating another human being.
I used thousands of laminating sheets and Velcro strips to make activities for your child. Never did I think to look around and recognize what meaningful activities children could engage in outside of playing with plastic folders. Back then I didn’t allow myself to consider “what kind of childhood is this?”
I spoke in a terribly singsong voice to your child. I truncated my language to two word phrases. I asked question, after question, after question . . . after question. No wonder your kid sometimes cried or ran from me when I came to your door. Looking back, this is one of the things I cringe over most! I knew I sounded weird but this is what all my colleagues sounded like, so I continued. I have long since forgone this inauthentic communication and traded them for words that connect and empower.
I taught emotions through flashcards. Flashcards!! As if there’s not enough emotion being demonstrated in the world, we boiled it down to a 2-D picture. I didn’t know how to explore the nuanced reality of everyday emotional experiences. I didn’t know how to explore both mine and your child’s emotion so that we could both better understand each other and the world.
When I had questions, I went to my clinical director or supervisors. I didn’t ask you. So often in these discussions, the all so common parent-blame game started. How I regret these moments when I was taught to point fingers rather than look within and listen to you.
I wrote program goals copied from other program books that I’d seen before. I wrote them on little sheets and then taught people how to put checks and minuses in those books. I wish I had not only created personalized goals that were actually meaningful to your child’s current life and future, but also questioned the significance of those checks and minuses. I wish I had to courage to share what I was thinking “Do these goals really matter?” “Why is this important?”
Speaking of courage . . . boy did I need more of it! I listened to my colleague’s countless conversations about parents being “crazy”. Back then I didn’t have the courage to say, “Hey, wait, it’s not possible that this many people could be crazy.” Trust me, the statistics on the numbers of mental health cases in America don’t support the number of people I heard being called “crazy.” Furthermore, these so-called “crazy” moms were never given mental health referrals, which would be the appropriate response for any if someone were to have mental health concerns.
When parents like yourself questioned or offered constructive criticism, I’d answer with, “Well, you’re the expert on your child,” stated in the same condescending way my colleagues had previously used. Seriously?! I’m embarrassed to have ever uttered this phrase. Rather I should have allowed for an honest sharing of concerns. I should have leaned in and made you feel heard.
I thought it was odd or silly when we used to tell parents that we didn’t want their child to get attached to one provider. Sure I made excuses to stay on your case when the higher-ups wanted me to move on. I was attached to your child and your family. I regret that I wasn’t brave enough to state the real reason I needed to stay on the case was because of our relationship. I regret the culture of shame around becoming too attached to the families we treated. Now, years later, I cannot imagine having my five-year-old go off to school and not forming an attachment to those caring for her for six hours a day. I now know the comfort of having my child within the care of someone I trust. How could the autism field value generalization over meaningful relationships? I didn’t get it then and I still don’t.
I was afraid of saying “I haven’t,” and “I don’t know.” Instead I covered it up with, “I can.” I didn’t stop to consider how my lack of knowledge or lack of experience might hurt you, your child, or your family.
I allowed you to sit in the room and watch me do drills, thinking that you were learning something from me. I even watched you act like me. Yet, I didn’t ask you if this was helpful, if this was important to you, if this is what you needed to be doing with your time. It was the policy that parents participate in sessions, so I did it. And you complied…but I’m pretty sure you could think of far more valuable uses of two hours every day.
As the days passed, I started to shift. I developed the courage to treat by my values, to question the status quo, to slowly shift into who I am today. Its hard to even recognize that 22-year old that sat with your child at that small table. I’m grateful for all my mentors, continuous education, and meaningful experiences with autistic people that have contributed to my shift. Most importantly, I’m grateful that I stuck with it. I stuck with your kid and your family. I found what therapeutic style works for me as a clinician, and I worked at refining my abilities. I’ve married, had two children, and started a business of my own.
My self-reflection of the past becomes important only in the context of the future. My grassroots shift would not be plausible without the beautiful and varied relationships that I have with actually autistic people. My autism shift is a promise to those that identify on the spectrum and their parents who don’t deserve the inadequacies of our field.
This is my grassroots shift to authenticity in autism treatment:
I understand that trust between us will be built in small moments. I will earn your trust through my actions.
I will treat you and your family with the dignity and respect that you deserve. I’ll only use therapeutic techniques that I would consider doing with my own children, friends, and family. I will be thoughtful and respectful in my interactions. I promise that I will not be a part of othering you.
I will be vulnerable with you and hope you feel safe enough with me to do the same. This will be a risk for both of us, but I know it will make our time together authentic and meaningful.
I will allow you in to my heart and I hope to know your heart too. We will truly connect. Connection is what moves this world forward. Connection is a profound human experience.
I will continue to grow and improve so that I can be the best therapist I can be. I will look beyond autism as a way to expand my therapeutic lens. I will continue to read about self-acceptance, attachment, relationships, love, emotion, mindfulness, decision-making, creativity, and all the essential aspects of being human.
Foremost, my clinical decision making will be informed by people living and loving on the autism spectrum. With neurodiverse role models, I will encourage healthy autistic identity.
I will continue my grassroots shift and invite other to join me.
****This blog is written as an example of the inadequacies observed within the autism field. It is written as a first person narrative, yet it is a collection of stories from a variety of professionals in the field. Many of these stories are from my personal experiences, yet many are not.
Jenny Palmiotto, Psy D., LMFT (#47573), is the Clinical Director and owner of The Family Guidance & Therapy Center of Southern California. She is also the creator and host of Love & Autism: A Conference at Heart. She is president and founder of the non-profit One Day Tomorrow. She is a certified RDI consultant. Jenny believes that love is the primary goal in life and that this doesn’t change with neurological differences associated with autism. Her clinical practice focuses on improving quality of life through meaningful and authentic interactions. Jenny is an outspoken advocate for change within the autism community. She challenges the dominant discourse about autism. Every person needs to feel valued and live a worthwhile life. Jenny is passionate about walking besides her client’s as they live fulfilling and productive lives. Visit www.familyguidanceandtherapy.com or www.loveandautism.com to connect with Jenny.
This year the Love and Autism Conference in San Diego will be Sept 30 & Oct 1, 2017. Stay tuned for details.
You are the therapist that truly makes a difference. You CARE. We were lucky enough to have therapists that were like you. Our son HAS the ability to function in society on his own, mostly. It is people like you that make this happen. You are angels.
Ms. Palmiotto, I can not thank you enough for this. For a few years, I worked privately alongside people you describe here. I tried to tell myself it was only those few people or that particular agency, but I guess deep down, I knew there is a lot of this “going around”. The thing is, I have no formal education or training in the field. I am just a preschool teacher with a passion for helping individuals with special needs, particularly autism. It’s very difficult for someone like me to speak up about certain things to these “professionals”, or the families they serve, without having that piece of paper and letters after my name to back it up. For you to speak up about this, and lay your regrets about your own personal failings along the way, takes more courage than i can even imagine.
Thank you for your growth, and for being brave enough to share it. I used to think it was such a shame that my daughter was not diagnosed until her teens. Until then I was flying blind but doing everything I could think of to assist her in learning things in a purposeful way, since “osmosis” was not her learning style. We worked together as a team to help her learn the things she needed for a successful life, because only she knew how she saw the world, and only I understood that it was different but not wrong.
I see the “therapies” that many of these children go through when they get their diagnosis young, and I now feel like we escaped some sort of sci-fi brainwashing experiment on her. I’m now grateful that we did not get her diagnosis young, even though I would have liked to know what was going on, so I could have directed my efforts more effectively. However, when she finally was diagnosed, I was told by a wonderful therapist, very much like you have become, that I did everything right, even though I didn’t know what I was dealing with, and that she has progressed wonderfully and my relationship with her now is close and precious to both of us. She now lives independently and works semi-full-time at a job she loves.
The only therapies she needed were physical, for her lack of motor skills, and behavioural, in that she needed to be taught social skills and discernment, not robotic habits.
Thank you so much for opening up your heart to express your vulnerability. My son did not have a diagnosis when he started school and it was his first grade teacher who told me to have him assessed for Asperger’s. It was obvious at a very early age that he had some very unique characteristics. I never realized that those characteristics were actually all the signs of Asperger’s, until I read up on it. However, many professionals in the hospital and at school clearly had very little knowledge of how to work with my son. Communication with my son became particularly difficult. As much as he could speak eloquently and was obviously intelligent, everyone expected him to understand what they meant and he did not. They expected him to be able to understand language pragmatics and he did not. That is how he got misdiagnosed with psychosis, not once, but twice, even when I kept telling them to assess him for Asperger’s, over and over again. I had to go to a specialist to get it done right. However, a school district does not have to acknowledge a diagnosis as valid. The affect of that was, I finally had to ask the District Executives why the teachers were all showing off about bullying my son. Yes… The result of the professionals not listening to the parent and not acknowledging his Asperger’s, resulted in teachers getting angry at my son for having a disability. That is just bullying.
Thank you for the having the courage to write this article. I pulled my son from therapy after a year because of many of the things you mention here and it was considered “AMA” or “Against Medical Advice” (a laughable concept considering) and started intensive work at home. When I abruptly ended the sessions, they made me feel as if I was crazy, or worse, a bad parent for doing so. However, I felt like therapy was an utter waste of time, and even more, I thought of my son as a a therapist meal ticket. I calculated once that he had a dollar value of $20K annually to the therapy group I had him with 3 x a week – and that was 4 years ago.
I resented every single time a well meaning Dr or someone in the teaching field politely mentioned available therapies because I felt like I knew them for what they were – the new snake oil salesmen, preying on parental fears, speaking of things they had no real experience or certifiable qualifications, no professional authority, and offering cures or outcomes they couldn’t possibly hope to deliver. I’ve been so very angry at the entire concept of therapy, as if only some young 20 something sweet talking, smiling person would be able to accomplish in a scant 30 minutes progress that I would be unable to do all day with my son.
At this therapy group, they discouraged parental presence at all, even though I insisted on it up until the end. I felt like I was really taking my son to therapy so that I could learn myself, and apply any real good idea at home. After a year, they didn’t want me to be part of it anymore, and felt they could make more progress without me – as if “I” was the sole reason he wasn’t making even greater strides in his therapy. This too was laughable, as they simultaneously considered my son the poster child for successful therapy – sure I must have helped some, but most of it was their therapy and intervention.
My anger is not gone, and I honestly don’t have a lot of trust for therapists or the thriving financial industry that has been created and endorsed by insurance companies. All the while, I’m explaining this to my husband who felt we should be doing “something” – in spite of the all day somethings I was doing and the incredible progress my son was making. Without the word “therapy” around, it doesn’t feel like you are doing enough because you aren’t carting the kiddo off to a specialist. It has caused many an argument because in the end, it’s like you said – I am made to feel crazy that I think it is a waste of time, and not really effective in any meaningful way. Sure, in the first 6 weeks I got some new ideas – but I took those ideas home, repackaged them, and actually got results out of them.
But, I’ve joined RDI connect this week. The main reason – the mission is not about a 30 minute time window with a stranger who hopes to get my son to do something new – eventually. Also, it doesn’t look like RDI wants to hide the techniques either. I’ve been saying for a few years that if autism was really a problem we wanted to address, that you should have the choice of enrolling the parent in therapy because at the end of the day, that’s where the real work is done. You’d think the techniques were some kind of copyrighted secret and it would infringe on the business model if real solutions were ever to get out to the parents. It’s not the kids that are hungry for solutions so much as the parents. And parents that are drawn to RDI are probably just like me – they are up to the task and want to do the work if only someone will welcome them into the process.
Thank you for this.
We have a closed RDI facebook group if you are interested. It was started by a consultant.
As an autistic parent of autistic children, trying to educate myself on therapies and approaches to care in order to give my children what I did not have access to in my childhood, this blog struck a deep cord with me. Last year therapists came to my home several times a week to help my oldest child. It was difficult because I felt like I wasn’t being listened to when I would act as “interpretter” for what my child meant to express or to advocate for their needs. The focus shifted on to me — an autistic mother in need of social skills herself— a bit afterwards, and I noticed that my autistic way of doing things was seen as part of the issue and so therefore I had to step back and let them “do their thing”. I was very fortunate to be in contact with a local elementary school that has a wonderful human being for a school psychologist and a group of compassionate, non-discriminatory teachers. I learned from them that I was doing an amazing job as a parent, especially when I confessed to them showing my children wqys of stimming that reduce stress and thwart overload. As a parent whose autistic, I am defaulting to my own methods of regulation and teaching those techniques to my children. I think of it as a mother crow teaching her young, developing offspring facial recognition for survival (crows are excellent at identifying faces and use this recognition to assess danger). I have had much more success working in partnership with therapists and teachers with autism-supportive (NOT “autism friendly”) care. Autism supportive care means tat there is no struggle present to attempt to change unique and normal to autism behaviors, but rather, work with autistic behavior and neurology itself. Development needs to be seen in an entirely different way.
You are an incredible person. Your article was amazing to me being a parent of a 16-year-old child with severe autism. He has been in and out of various placements; some I asked to get kicked out of.
I kept asking for things that these schools could not stretch their minds to accomplish. It does take time to figure out how to help our children, and I would not feel bad that you had inferior supervision. You were doing what you were told to do. You had an incredibly hard job.
I applaud you for sticking with it and finding better ways to help our kids. We parents also have to learn how to deal better. We are just so passionate and stressed that sometimes we don’t relate well to staff. I regret getting angry with young aides who have best intentions. But I blame the administrators who often care more about the budget than the kids.
Thank you so much for your revelation.
I admire your courage for speaking out. Hopefully the people who need most to hear what you have to say will read your letter to the autism community. I am a mature age diagnosed autistic woman and fortunately I wasn’t subjected to those therapies but I did experience many difficulties in life.
These difficulties were caused by the ignorance of non-autistic people and their misguided attitudes to teaching people who are different. Most of all it was the lack of compassion and empathy shown to me and my neurodivergent peers as we became the butt of jokes and a form of amusement to others.
Excluded … personae non grata.
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