2 Comments Parents of Autistic Kids Are Tired of Hearing from Therapists
As a Licensed Clinical Social Worker, I interface with a lot of different sorts of professionals helping autistic children: occupational therapists, physical therapists, speech and language pathologists, school counselors, developmental psychologists, neurologists, pediatricians, psychiatrists, and more. Over the past few years, I have been taken aback by two statements that professioals across the board have regularly made about autistic children. To be clear, I don’t think that these folks are trying to be hurtful in any way. I believe that the intentions are pure. And I am certain that I have said my fair share of unintentionally harmful stuff, too! Ableism is baked into our culture and we’re human; it’s unavoidable.
That said, I want to unpack two of these statements, for the purpose of thinking more critically about how our words effect autistic children and their families. We have a lot of power in these professional relationships, and because of that power differential, it is important that we consider the impact of our words. I have had the privilege of sitting with so many children and families to deeply understand and process the short and longer-term impact of professionals’ words. Here are some that regularly land hard:
1) “Your child is not developmentally ready for therapy.”
Sometimes this comment is made slightly differently, by pointing out that the child is too dysregulated or not motivated enough to access therapy. Often this is the precursor to the therapist ending sessions with the family without a referral, with the recommendation to wait until the child is “ready” for therapy.
At times, this might be a decent recommendation. Maybe there is no crisis, and the child just isn’t interested. They’d rather be at theatre practice, and they are mentally well, with parents who are perhaps a bit high strung. But usually, if a family is presenting for therapy, things are not ok. When a family is genuinely struggling, this sort of “you’re not ready” ending can promote feelings of failure or rejection for the child and hopeless resignation for the parents. It can really derail things.
Maybe the form of therapy that we practice isn’t accessible or effective for this family. Maybe there is a personality mismatch, or we need more training to engage this sort of child, or the case is out of scope for some reason. If those things are true, there is no shame in admitting that we don’t have the skills to help. We don’t have to be experts at everything.
The reality is that are forms of therapy and therapists for ALL children, regardless of their age, level of motivation, emotional state, or ability to speak using mouth words. There are forms of therapy for infants, toddlers, nonspeaking children, physically aggressive children, unmotivated children, and on and on. If we as professionals are not educated about those other forms of help or don’t have a wide referral network, that is on us.
Parents and kids deserve targeted referral options and hope, rather than blame-shifting statements that leave them feeling like a lost cause with nowhere to turn. No one wants to be told that their child is beyond help. No parent wants to wait helplessly while they watch their child fall apart. Some children will never be ”ready” for certain types of therapy.
2) “Your child can do XYZ when they want to, so really, this is just a behavioral problem.”
Autism is a dynamic disability. This means that it impacts us differently depending on the day. No human being has a totally static limbic system. Stress, hormones, sleep, nutrition, social belonging or exclusion, trauma, aging, and so many other factors impact our sensory systems, emotional regulation, executive functioning, and other skills. This is true for all human beings.
Neurodivergent folks, especially, can wake up one morning with one sort of sensory system and the next morning with a very different one. For example, there are days that certain smells gross me out, but I can cope. And then there are days when opening a fridge door makes me run from a room crying, days when a yucky smell will cement itself to my brain, haunting me and interrupting my focus for days. Just because I’m able and willing to open the fridge on Day One doesn’t mean that on Day Two I’m being defiant or lazy for refusing to do so. Our brains are ever changing, and our capacity naturally fluctuates in response to those changes. My unwillingness to open the fridge door on Day Two is actually very adaptive and healthy. Day Two is a good day for me to ask for help.
Rewards and consequences can at times be supportive for children, but suggesting that a neurodivergent child’s issues are “just behavioral” shuts down curiosity and learning about their history, nervous system, sensory world, emotional landscape, attachment style, access needs, and the dynamic nature of their disability. It’s too easy. It blames the child and also indirectly blames their parents. It tells parents, “if you were just consistent with your discipline, there wouldn’t be an issue here.” Parents of autistic children are constantly, constantly, constantly hearing this in a million different ways (!!!) and it’s never helpful.
Being humble and self-reflective is not optional in our line of work because of what is at stake. Our words can reverberate in the minds of vulnerable children, shaping their self-understanding and self-worth for a lifetime. Our words can preoccupy, distract, and derail parents and families. Our words matter.
Danielle Maxonight is a Licensed Clinical Social Worker in the State of North Carolina. She has over a decade of clinical experience working with children and families.
In August of 2015 she created her private practice, Under Wing Therapeutic Services, PLLC, which offers attachment-based therapy for parents and children. Danielle specializes in working with gifted, twice-exceptional, autistic, and neurodivergent families.
Under Wing Therapy supports families in Asheville, Raleigh, Durham, Cary, Chapel Hill, and all across North and South Carolina.