Notes on Inequalities in Autism Activism and Care in Morocco

“Autistic,” “Crazy,” and Other Conflicting Categories

We typically think of autism activism as awareness raising or political lobbying. These are no doubt important aspects of it, and my Moroccan friends spend much time engaged in such work. But more than anything, autism activism in Morocco is a project in world-making, an attempt to create novel spaces and institutions for – as well as to cultivate new dispositions toward – people who might otherwise be considered crazy (ḥemmaq), retarded (met’akhkhar), or possessed (mejnun). In other words, it is an attempt to create worlds where certain marginalized people can thrive and experience a measure of belonging. Such social projects live on the determination and energies of particular human beings, and so we inevitably find ourselves in the realms of exhaustion and endurance. It is little wonder, then, that I heard repeatedly throughout my research about the sheer physical and emotional toll of the work of being an autism parent.[1]

“Autism,” says Jamila, a dedicated Moroccan mother who singlehandedly founded and runs the first autism association in her hometown, “the word, ‘autism,’ for me is a word we have applied, invented. But autism, what is it? These children…” she gestures around her. Four students are scattered about the classroom, here in the middle of an urban public school. Her association was granted these rooms – bare of any equipment and unstaffed – by the Ministry of Education. We are in a special room, elegantly equipped for a particular kind of physical therapy (psychomotricité), for which they have yet to find a trained professional. At the moment, it houses a modest dance party. A teenage girl twists with exaggerated, expressive gestures, eying the two aides at her side. A young boy stares mesmerized at his slow-moving limbs in a full-length mirror. Another girl rocks front to back on her staggered feet, exactly in rhythm. Jamila’s son hinges deeply at the hips, dipping down past 90-degrees and shooting back up again. Music plays. “Excuse me, but these children are little crazy people (des petits fous),” Jamila continues. “Yes or no? I mean – we never called this autism before… Frankly, we would say, he is crazy (fou). She is crazy. But now, when certain parents were affected (touché), they found this word: autism. But it’s not true. It is unfortunate to say this. But when you go into a psychiatric hospital, the people locked up in there, are they not like this?” She gestures again around the room. “My son, for example, if I did not exist. Imagine: me, I do not exist. He would be locked up somewhere. I’m here, and I organize his life. But without me, he can’t do anything – go to the bathroom, prepare food, nothing.” She goes on to talk about a young homeless man who picks through the trash in her neighborhood. “He is young and beautiful, and he is crazy. He is just like my son,” she says, “except that I am here and his parents are not.”

Jamila’s remarks will strike some as insensitive, perhaps plain wrong. But she captures something important about the wave of autism activism swelling across urban Morocco. Indeed, what makes the children in Jamila’s association “autistic” rather than “crazy,” sociologically speaking, is precisely the intense effort of their parents. In fact, it is not an epistemological question, as Jamila poses it – “it’s not true” – but rather an ethical distinction implying a very different economy of effort, one to which Jamila is deeply committed. An autism diagnosis (whether made officially by a physician or informally by a fellow parent) implies a potential for improvement and demands an investment of time and resources far surpassing what a child labeled “crazy” or simply “retarded” could expect. In this ethical economy, people assigned to the latter categories are more properly the recipients of charity or compassion than of intensive educational practices.

Before continuing, a caveat is needed. The concept of the autism spectrum has expanded widely in many circles over the past three decades. Some readers will notice that my descriptions hover at the more severe end of that spectrum. In my home country, the U.S., some people who are “on the spectrum” are, in fact, exceptionally autonomous and capable: they graduate college, hold jobs, live independently, write books, raise children of their own. In Morocco, the diagnosis is typically (though not exclusively) applied to people with more dramatic symptoms. These are the children and adults with whom I typically worked and whose families I most often met. The reasons for this are multiple and debated, but for present purposes we must leave them aside.

Exhaustion

Autism care in Morocco is intense. This is partly due, as I mentioned, to the characteristics of some of the people so diagnosed. Take Selma. She does not speak. When upset, she might bite the back of her hand until blood streams out. For years, she stayed up all night: now laughing, now screaming, now crying. To allow her siblings and neighbors some rest, her father would walk her hand-in-hand through the emptied streets of their poor neighborhood. The next night would be her mother’s turn, and she would sling Selma onto her back and rock her to sleep on the roof, crouching under the quiet, unjudging night sky.

As a child, while walking through the old medina, Selma would touch and even take items she passed. Shopkeepers accused Karima of teaching her daughter to steal. Others told her to keep her daughter at home or to pay for the things she broke. One day Selma disappeared into the crowded market while Karima shopped with her son for a soccer jersey. After finding her, Karima made a decision. Whenever she went out, she would wrap Selma to her back. She continued to do this well past her daughter’s sixth birthday. No schools or centers would accept her, and it became increasingly difficult to take her out of the house. Karima’s knees started wearing down. Their home, she told me, became a prison. Indeed, throughout my interviews, parents spoke of being “locked” or “trapped” or “imprisoned” in their home with their child, whether by fears of others’ judging eyes, their own child’s violent outbursts, or the thought of losing a child who can neither speak nor fend for him- or herself.

It is not surprising, then, that so many spoke to me of exhaustion, of low-running stamina. To describe this, parents used a variety of idioms. Youssra told me she feels “choked” or “strangled” (mekhnuqa) when caring alone for her son over long stretches of time. One day, she passed a breaking point. “On Sunday,” Youssra told me, “it was me who had a crise. I started to scream and bang my head and finally I fell to the ground (ṭeḥt). I was the one who fell. In the end,” she continued, “I too became autistic.”

Labors

Autism associations are unique in that they are service providers and that almost all are founded and operated by parents.[2] Morocco’s first halting experiments in autism care began in the 1980s and 90s. In 2000, only two nongovernmental organizations (NGOs) catered specifically to autistic children. But the past decade has brought an explosion of more than forty new autism associations across cities big and small.[3] The parents running these NGOs have educated themselves about things they never imagined learning: accounting, the legalese of statutes, the principles and finer technical points of therapies, the tangled jargon of psychiatry, and much, much more. They manage employees, square up budgets, write grant proposals, hire experts, organize trainings – and then they come home to care for their own children.

These associations and the classrooms they run open up new horizons of possibility, however fragile and fleeting, for families. They receive children who were refused by school after school, and ultimately turned back to their homes where their underprepared and exhausted parents do their best to cope largely on their own.

When an association opened in her small city, Karima was a founding member. Her daughter was nine, and it was only then, when she met the president-to-be, that she heard the word “autism” (tawaḥḥoud) for the first time. And with this word came many things. Selma now goes to school. She now knows the difference between day and night. When the bus driver honks in the morning, she grabs her backpack and steps out the door. Not only that: Karima is no longer bound to the home. She now joins her daughter all day every day in the school, where she cleans and helps to care for the children.

But the word autism also comes with a particular ethical economy. Indeed, the autism diagnosis often brings hope for significant improvement through incremental progress. And in this model, the parent is the modal therapist. When giving advice to young mothers, one parent-activist uses the metaphor of a train. Others (doctors, teachers, aides, etc.), she tells them, will get on board and join you for a stretch; they will help you for a time. But, when their time comes – and it must come – they will get off. They will have children, move to other cities, pursue their own lives. Only you (the mother) will be on that train with your child until the end.

When an association opened in her town, Karima soon learned that she must “work with” her child (tekhdem me‘aha), not simply take care of her. In fact, in this configuration “working with” equals caring, and care itself becomes a sort of technical labor.[4] Karima was told to stop hand-feeding Selma, to teach her to dress herself. She needed to talk to her and to fill her time with activities and interactions whenever possible. It is deeply rewarding for her to see her daughter transforming. But it is also hugely taxing and demands moment-to-moment engagement. And much about the future remains uncertain. For example, where will eleven-year old Selma go when she outgrows this elementary school?

By creating associations, a small group of committed parents have managed to pry open the door to special education for hundreds of children (and now adolescents and adults, too), including their own. But, as I discuss below, in the current division of labor, the parents are forever left holding the crowbar. Charitable donations and grants help to lessen the burden. But, as anyone in the field will tell you, the labor and finances necessary to keep these associations afloat rest largely on the shoulders of affected parents. And there the load has remained. In what follows, I will sketch the current state of autism care in urban Morocco and detail some of the consequences for the families that are constructing, maintaining, and inhabiting this new Moroccan autism world.

Paradoxes

The first autism associations opened centers, which they have expanded over the years. In the flurry of new NGOs, however, the modal unit is the classe intégrée (integration classroom).[5] Overhead costs are much lower than for centers, and because such classes are housed in public schools, they afford opportunities for autistic children to interact with “typical” peers during recess or through initiatives that bring them into one another’s classrooms. The Ministry of Education often provides empty classrooms – or, as one mother put it, “they give you the walls” – but the associations equip, staff, and operate them. Charitable and governmental institutions contribute funds to specific projects, typically focusing on trainings, materials, and equipment.

No one wants to give money for monthly operating costs, parents told me again and again. Indeed, very few associations I met receive any outside support to help cover salaries or other recurring expenses. Almost all rely on out-of-pocket tuition payments from families; these typically cover the salaries of the educators who animate classrooms and the experts who train and oversee their work. Monthly fees range from 1,000 to well over 2,000 dirhams (from about 90 to over 180 Euros), far surpassing the monthly salaries of many families and putting autism care well out of reach for most average Moroccans. Several NGOs have waiting lists brimming with families who cannot afford to pay. Others take on a few poor families and cover their costs through private donations or fundraisers.

All this ad hoc support presents a paradox. Step into some NGO classrooms, for example, and you may find a pristine space with brand-new, high-quality therapeutic toys and a flat-screen TV. On freshly painted walls hang handmade plastic visual schedules with strips of Velcro (a luxury only recently available in Morocco). Children work at special desks with aides in white smocks. They play on big bouncy balls, or take breaks on cushy beanbag chairs. Their work materials rest orderly on colorful bookshelves. But you quickly learn that the association is borrowing money, or going door-to-door in search of charitable donations to pay the aides’ meager monthly salaries. Further, with a dearth of qualified professionals and limited means for paying them, the aides who carry out the day-to-day work are often themselves trained by the parents. There are many speech therapy rooms but few speech therapists, many walls but often little to do within them. 

In the slip and slide of obligations and patchwork of contributions, roles are easily confused. “I thought we, as an association,” one mother told me, “were supposed to lighten the load of the State. But now, it’s the opposite.” “The new parents come along,” another mother said, “and they treat you like you are the State (bḥal nti hiya ad-dawla).” They demand their rights and they bristle at the mention of monthly fees and waiting lists.

That families mistake NGOs for the State is not at all unreasonable. Several factors create this impression. Classrooms are typically situated in public schools, and the NGOs often receive funds from bodies connected to the government and the royal palace. In classrooms, one finds many logos – l’Initiative Nationale de Développement Humain (INDH); Ministère de la Solidarité, de la Femme, de la Famille et du Développement Social; La Fondation Mohammed V Pour la Solidarité and other similar organizations – stuck proudly to walls, televisions, computers and other equipment. The INDH and Fondation Mohammed V are clearly tied to the monarchy and the Ministry is, of course, a government body. It is also common for a new center or set of classrooms to be inaugurated by a representative of the monarchy or the government and broadcast on television and the radio. Seeing all this, families understandably imagine certain entitlements for themselves. For example, they might assume their child cannot be turned away. But due to limited capacities, strained resources, and self-imposed quality standards, the NGOs cannot and do not accept everyone.

The ideal  ratio for autism education is said to be one aide to each student. Indeed, “one-to-one” has become a sort of mantra in much of Morocco, and I have heard it all over the country associated with autism and the most popular autism therapy: ABA (Applied Behavioral Analysis). Associations with less staff per student, of course, can afford to lower their fees. Centers for the intellectually disabled or for multiple handicaps often charge much less than those specializing in autism (some are 200 dirhams [18 Euros] a month), with each staff member responsible for a group of five to ten children. The landscape of care is thus highly variable in terms of price and quality, and several families I know have described ping-ponging from one association to the next, finding the price too high here or the quality too low there. Fifteen year-old Rachid, for example, has been to twelve schools in ten years. Others decide to keep their child at home, unable to pay for the best care and fearful of placing him or her in a large, poorly supervised center.

Finding, training, and retaining staff to carry out autism care constitute an unending struggle for parents and NGO leadership. The work is arduous and poorly paid. Some aides make less than a 1,000 dirhams a month (about 90 Euros), and very few make as much as the national SMIG – the minimum-wage monthly salary – of 2,231 dirhams (roughly 200 Euros). Parents often hire unemployed youth with no prior experience and little investment in the work, and then train them in autism therapies. Eventually, wealthier families sometimes cherry-pick the more apt or dedicated among them to work with their children at home. They can more than double their salary, in many cases. Parents, thus, find themselves recruiting and training new staff over and over, only to lose them to wealthier employers. Bahija, for example, hired and trained twelve aides to work with her son during a 14-month period. She is demanding of the people who work for her, but she provides them with the training and materials they need. Her son is difficult, but he is also extremely sweet, charming, and making impressive, if measured, progress. Some aides burn out. Others seek better pay once they have acquired some skills through training and experience.

Having found a certain measure of hope – whether through internet searches, discussions with other parents, or the therapies they have begun – many parents express a deep discontent with the lack of available expertise. They consider moving to Europe or the United States. Some even do emigrate. Parents and staff alike repeatedly told me that there are only two psychologists in the country trained in ABA. Certain parents, especially those running NGOs and coordinating their activities, tend to have privileged access to these experts, and others accuse them of monopolizing their time. Ultimately, this tenuous configuration of care fosters multiple kinds of suspicion and competition among parents and staff, making their situation even more fragile.

Conclusion

It is perhaps unsurprising that there are significant inequalities in autism education and care in Morocco. Indeed, the Moroccan healthcare and education systems, more broadly, are riddled with inequities. And there is no doubt that caring for severely autistic children and adults is often challenging the world over. But the political and economic structure of the field of autism care in Morocco creates an unusually complicated scenario as different kinds of inequalities and expectations collide. As one mother told me, “If you are going to have an autistic child in Morocco, you need to be very rich (khessek tekoun la bas ‘alik).” There is much truth in this. Yet, even those with resources and connections find themselves caught in an impossible dynamic where their Herculean efforts are only just barely enough to keep the whole thing going: the classrooms, the trainings, the budgets and salaries, the round-the-clock engagement. So there they stand, like the Greek hero Atlas, bearing the weight of the autism world on their shoulders as they struggle to provide special education, social belonging, and, perhaps, a better life for their children.

[This article was originally published on Farzyat/Inégalités.]