Can you recall your most memorable restaurant meal? Perhaps you and your partner went out for a special night out on the town that started off with a romantic dinner that included a delightful entree, a nice bottle of wine and impeccable service. You might have felt a glow of warmth and well being while basking in the attention of your date and enjoying the ambiance, expertly prepared food and elegant service. This occasion might have gone into a list of Top Life Experiences in the Romantic Night Out category.
Can you recall your worst restaurant meal? Perhaps you and your spouse decided to try a new place that had been well reviewed. Everything looked fine on the surface as you arrived, were seated and placed your order. Soon, however, noticeable gaps between expectations and reality created some distress. Perhaps the medium rare steak came out well done and the server argued when you asked for it to be redone. Maybe your meals arrived at the same time as your appetizer and salad, with the result being a table now crowded with three courses. Some other patrons were a little too drunk, loud and coarse, ruining what should have been a quiet, elegant dinner.
Restaurants have a varied pace of service delivery that is dependent on a number of factors: the number of staff on hand, the number of patrons and the resources available in terms of training, tools and goods to meet client requirements. When they are short handed, when the equipment malfunctions, when training standards are ignored and when ingredients are of poor quality in either their raw state or due to poor preparation, there is impact on everyone in the system. Line cooks, wait staff, managers in the front and back of house and diners are all affected. However, patrons are often ignorant of the root cause of the problem.
In fact, they are sometimes patronized or bullied a little by restaurant staff who don’t want to acknowledge a problem that requires expense and effort on their part to repair. Multiply this little anecdote by several tables’ worth of customers who have encountered problems with their meals and the kitchen is likely to begin to fall further and further behind in the preparation process. Too many tickets that are in the “as yet unmade” category puts them into a state of delay and confusion known as being “in the weeds”, meaning that the number of orders that have accumulated and that also have yet to be prepared is so long that the line of tickets metaphorically extends out the back door of the kitchen and into the weeds at the back of the property line behind the restaurant. It’s a difficult space for all parties.
Diners will be disappointed and possibly angry. Staff will be redoing tasks that weren’t done correctly and feeling pressure from falling further and further behind. Tempers may flare and some harsh words are likely to be spoken both in the kitchen and in the dining room as everyone tries to figure out just how to get things back on track and who is to be blamed for the original problem. Parenting is akin to a restaurant that usually runs well but sometimes finds itself “in the weeds” due to unanticipated demands.
Parents have certain expectations of themselves in their role. They expect to be happy in the experience of parenting, for the most part, and expect that the children in their family will conform to the behavioral norms that they have seen in other infants and children. Most likely, they have a system of thinking about how they will interact with their children and a body of outcomes that they expect to see based on successful implementation of this system.
Most new parents do quickly find themselves in the metaphorical weeds of parenting, as there is a steep learning curve with each addition to the family and tremendous need for careful, consistent execution of all aspects of a child’s care in order to experience these positive outcomes. They catch up, in time, to the needs their children have, to their individual traits, preferences, talents and limitations.
Two extroverted parents may need some practice and time in order to accommodate the arrival of an introvert into the family system. Accepting that their little one thrives in an environment that is oriented more towards a calm, quiet ambiance and consistent routines with a few favorite people may be at variance with their own social preferences, but is probably not an uncomfortable stretch for long. They will make their way out of the weeds soon enough and get back to the business of family and professional lives.
Maybe another family has an infant with feeding difficulties due to acid reflux. They might find themselves in the weeds for a bit as they discern whether they are dealing with an allergy to dairy or to soy. It might take a combination of drops for gas, a change in formula and careful positioning when feeding to begin to move back into the sense of normalcy in family life that preceded this season. There are many such episodes that parents are able to successfully address and overcome.
Some conditions, however, cannot be resolved and must be managed to. Parents who are supporting children with severe illness or with a disability face more severe impacts to themselves and to the family system. Disability that is less visible can exaggerate some aspects of that impact, because others don’t know to make allowances and are often less willing to do so even when advised that the child in question is on the Autism spectrum or has any other condition that isn’t physically obvious.
Once in the weeds caring for their children, many of these parents never manage to fully come out. They are too busy trying to help their child to catch up socially, intellectually, physically and emotionally. Resources of time, energy, emotion and money are usually stretched with the arrival of any infant. Adding the challenge of a special need into the mix can further tax these essentials and can also impact the family system by adding a great deal of additional anxiety to an already challenging season of life.
Every parent quickly learns that there are those who will try to insert themselves into decisions about all aspects of care including feeding, schedule, style of interaction between parent and child and options for child care. There isn’t a real correlation between degrees of competence, expertise, experience and insistence in many of these cases, and parents have been advised to do some pretty foolhardy things in the name of best practices based on either traditions or current fads.
“Let the baby cry… if you pick him up, you’ll spoil him.” “Why do you want to breast feed?” “He hasn’t had any cereal yet? We gave our baby cereal at six weeks old!” “Our baby drinks only organic carrot juice.” (True story! And the poor baby suffered severe malnutrition and orange skin!) Advice givers are to be found everywhere for many parents, from the neighborhood grocery store to the local P.T.A. to the extended family gathering at Thanksgiving. Most parents develop selective hearing after a time, which can aid in the preservation of sanity.
Other parents are not so fortunate and are the target of more frequent pronouncements of “what you must do” or “what you must stop doing”. These parents have children with special needs and their offspring sometimes have differences of behavior, appearance and ability that draw the attention of others. They are inundated with opinions- sometimes in almost every random encounter of daily life. Every one of these interlopers is an expert, it seems, and they press their generally uninformed advice onto the hapless parent trying to manage their child’s sensitivity, meltdown or communicative difficulty.
Many then almost thank themselves for having done a service to their fellow man, and internally or out loud, compare their own “better” children to the special needs child. They are intruders whose uninformed pronouncements are a form of negative socialization akin to bullying.
Another class of interlopers often intrude and demand that these vulnerable parents buy products to “cure” their loved one’s disability. These products range from the more dubious, such as high fiber supplements and high dosages of vitamin, mineral and herb supplements, to the truly heinous, such as dosing Autistic children with bleach to clean their gut or excessive medication which constitutes chemical restraint. A few parents in urban areas have even clipped their child’s vocal cords in order to prevent certain noises! Some therapies aren’t much better.
Applied Behavior Analysis focuses on getting Autistic children to adopt socially acceptable behaviors, but can ignore the questions of agency, dignity and healthy management of anxiety in these vulnerable children. Relationship Development Intervention is an ethical model of intervention, in my view, but is not accessible to many families due to the expense and due to the fact that it’s not generally reimbursable through insurance. Money is an inducement to many people working in the space selling products or therapies, each touted as effective, essential and many presented as an all-in-one answer or “cure”.
Parents have been duped out of enormous amounts of time, money, energy and hope. The truth is that while some of these modalities can deliver good results in skilled hands, none of them really live up to the implied promise of making Autistic and other special needs people materially more like the general population. That’s because Autism isn’t fundamentally a social or psychological disorder. It’s a neurological difference with conditions that follow on real differences in brain structure. Other invisible and permanent differences are equally more a matter of management than of attempts at a cure.
Parents in these family systems face challenges from multiple sources: their child’s special and perhaps unknown needs, their own learning curve, energy and confidence in their role, filtering the advice and criticism of interlopers who wish to sell products and therapies and advocating for themselves and their children in familial, social, educational, legal and medical contexts.
Internal impacts tend to occur along three fronts where gaps between anticipated outcomes and reality create anxiety and other emotional fallout: a sense of oneself as a competent parent who will successfully raise an independent, competent child, a sense of one’s child as following a logical, normative, discernible developmental curve that will lead to a happy, satisfying life and a sense of support from one’s close networks and the larger social structures that includes acceptance of you, your child and your family’s collective experience through the resonance that mirroring can create and the resultant sense of not being isolated, alone or marginalized.
Repetitive patterns of divergence between hoped for outcomes and reality in these areas can create extreme distress, hopelessness and compassion fatigue in some cases. Compounding the difficulty and its attendant impact is the very real distress of not knowing what many with Autism and other disorders that impact communication and cognitive function want, need, feel or think. I may know that my niece loves to turn on her Kindle at full volume at 2 am and come stomping up the stairs, and I know that it’s very important for her. I confess, however, that I have no clue why she does it. That gap in knowing tempts me to fill in the blanks with my own “best guess”. That’s NOT a good idea.
My niece is not me. Her internal script is different. Children and adults on the spectrum are often marginalized when others attempt to fill in the blanks with their own best guess of what is going on from the perspective of the person with A.S.D. and modalities are then implemented to shift behaviors to those that are more easily tolerated by their family and friends. That wrong best guess can really complicate an already fragile communication channel and fracture trust and even familial connection.
If we as parents, family members, teachers and others are going to employ some techniques to impact behavior, we should at least take the time to understand things from the perspective of the person with special needs. Further, we should take the posture of a neutral, open and curious observer, not of an authoritarian expert. Forcing compliance with desired changes in social behaviors damages the intangible commodities needed by the special needs person to effectively and happily live out their life.
When someone in authority such as a parent, teacher, doctor, therapist or police officer fills in these very important blanks incorrectly, they unwittingly show that they lack the necessary information to make an informed decision about how to best proceed. Interacting in a respectful, sustainable and healthy way with the differently abled person necessitates a robust emotional intelligence that includes a willingness to be open, curious and neutral with respect to expected outcomes. A great deal of damage has been done in the name of “helping’ those with special needs become more socially acceptable and better able to tolerate environments that they aren’t easily able to endure in the name of what is “acceptable” and “normal”.
Whether it’s forcing a young child on the spectrum to sit still in a chair in the name of “therapy” for hours on end so that they can attend a school that is not designed with them in mind or advising a parent whose toddler is having a melt down due to sensory overload that he should spank them to gain compliance, the impact of these negative encounters is greater in those whose lives are already complicated by sensory, cognitive, social and other differences.
Let’s say that two children were asked to run a one hundred yard dash, but one of them was required to do so with shoes untied and with someone poking his ribs at unexpected intervals as he ran. Who do you think would be likely to get to the finish line first? Add to this little narrative the likelihood that some interlopers will come along and comment about how the child could have performed more successfully if only he had tried harder, concentrated, been better prepared or had a better character. Various pills may be proposed to make him able to concentrate, move his feet despite having shoes that are untied, or make him able to focus despite being poked in the ribs.
Perhaps his parents will be told to visit one or more sages with their child so that they can discuss how the right mindset can help the child to run just like his peers. All of these interventions may help, in a measure, but as long as his shoes are untied and his ribs are subject to being poked, he will not have the discretionary energy and focus of his peers. He has to concentrate much more to perform the same task. That’s never going to change, entirely.
Dealing with pill pushers, sages and random critics won’t change that. But parents, peers, teachers, pill pushers, sages and random critics won’t desist, in many cases, from peddling their perspectives, their therapies, their pills and their punishments as an answer to the problem of living with special needs. The fundamental problem is that we have inverted the paradigm with respect to the party that needs to accommodate the difference.
What if, instead of heaping opinions, interventions and scorn on the heads of those who are differently abled, we resolved to understand that their share of the burden is already exhausting their resources? The degree of energy that it takes just to get through the day for someone who is intellectually or developmentally different is impossible to overstate. Every little episode of variance with social, intellectual and communicative norms is subject to commentary, criticism and sometimes a patronizing superiority that is cringe worthy.
As a world, we are more connected now than ever. Trolls and bullies no longer lurk merely in the hallways and outdoor spaces of school, but can invade the safety of the home with the simple press of enter or send keys. A little girl was in the news recently who had been managing to an ADHD diagnosis and who was also on a new medication had also been struggling due to bullying in her school. Between the combination of the effects of the new medication and the very negative environment at school, she hung herself. It was an impulsive, wholly unanticipated act. It serves, however, as a necessary albeit stark reminder of the ramifications that our current approach to those with special needs portends on a larger scale.
All humans hunger for connection born of understanding, acceptance, resonance and inclusion. When we demand that those who are least able to afford the sacrifice of additional energy, emotional and cognitive resources remain in a state of hypervigilance lest their differences of behavior cause us to bully them, assault them, verbally abuse them, ostracize them or shun them, we cannot call ourselves enlightened, compassionate, ethical or even particularly effective. We must do better.
Preparation is the key to success in parenting, education and advocacy. Real preparation includes consulting with all stakeholders before formulating a plan to move forward. How often do children and adults with special needs deal with a program that is supposedly designed to “help” them that was conceived, designed and is now being implemented wholly without their awareness, consent or input? I think that we must be honest and admit that our prior efforts in the home, the school and the workplace have fallen far short of the most elementary needs for accommodation informed by perspective drawn from those who are differently abled.
We must resolve to begin again by inquiring what the felt experiences, perspectives and needs of each person are. Parents, teachers and those whose roles entail attending on the management of one or more aspects of a special needs person’s daily life must work collaboratively, strategically and patiently alongside their clients. They must also develop their own self-care routines and overall quality of life in such a way that the gravity of their daily experience is not centered in the outcomes of attempting to perform this work successfully.
Otherwise, it’s too easy to become bogged down in the factors of “should”, “must”, “could” and “if only”. An almost unconditional equanimity must prevail so that their focus in their role is slightly detached, at least as it pertains to expectations around the outcomes of any attempted interventions. A special need isn’t a moral state and we do tend too often too moralize around the implications of our perceived evaluation of the degree and consistency of cooperative effort expended on the part of the person we are supporting.
The truth is that we don’t know WHAT we don’t know. While advances in imaging technology and other scientific and medical advances have significantly expanded the body of knowledge around special needs concerns, we are still at the very early stages of attempting to develop better, more relevant assistance for difficulties experienced by people with Autism and with many other conditions.