I’m about to do one of the scariest things I have done in my entire life. On purpose I mean. I’m scraping together all my savings, which isn’t much and is quite slow to recover, and I am buying a business license. I am opening a business to help provide affordable autism therapy and case management support for children in the GCC, and maybe even Pakistan if anyone from there asks.
I feel nervous just writing this, because making it public means I can’t go back. As if it isn’t public already, I had my first meeting today with an autism center here in Dubai to draft an agreement so we can work together. They will provide case management services and I will provide live-in therapists for families whose children need ABA therapy, school shadowing, or full-time care. I began laying the groundwork for this almost a year ago when I bought the domain- AutismUAE.com. Since then I’ve only managed to occasionally populate it with autism news, because I’ve been afraid to carry it forward as well too busy with work to pursue the business plan seriously. Basically, I had been waiting to have the time for AutismUAE. Now, I understand that I have to make the time, and I will have to quit some of my design clients in order to focus on its development.
I’ll be losing a source of income as well as digging a huge hole to pour money into. I’m hoping that money will be the seed for something that grows into something great, but I’m a bit of a timid gardener. I’m worried- not only because I will be financially bound to maintain the cost of my business license, but I will also be responsible for the health, welfare, safety and security of ABA therapists who could be dispatched anywhere, depending on where there is a family in need. As an employer and a Muslim, I need to make sure their contracts are equitable, that their working conditions are safe, that they are treated with dignity and respect when so many ‘domestic employees’ in the world are treated like animals. I have to make very, very sure that these therapists- who hold bachelors degrees in psychology and special education and occupational therapy are treated with the importance that they maintain in the child’s future. I have lots of faith in God but little faith in mankind in general. Even Joy, Khalid’s therapist, has spent over two months in the low-budget prison that is deportation because her previous employer was unhappy with her decision to move to another family (us) and dropped her off at the police station a day before her flight to Dubai with nothing but the clothes on her back.
She basically disappeared- her phone was taken away, we had no idea where she was, even her clothes were stolen. She lived in a crowded penal facility with almost a hundred other women who ate meager rations and divided themselves along racial lines, forming violent gangs in the desperate bid for self-preservation. And this isn’t prison, it’s deportation. Think Mad Max and anarchy, but with women crying themselves to sleep each night and living like ghosts because some official forgot their case and they have no way of contacting their families or reminding the world that they’re still in there.
And that is exactly what I don’t want to happen to my therapists, my people. I haven’t even hired them yet, but already I’m shaking at the thought of being asked by Allah what I did to protect them, whether I made sure they were going to families that were safe. I am relieved, extremely relieved, that at the meeting with the other autism center the director agreed to the term that I felt was most important- that if the families should mistreat or neglect my therapists, that all services with the family, from both my organisation and hers, would be terminated, and the family would be blacklisted. There are limited resources in the UAE- the other center is one of only two credible ABA therapy providers in the UAE, and if you want your child to have a future, then you better make sure you treat your therapist with respect and honor your contract.
In an autism therapy center where the visas are with the company and the therapists live in their own homes, there is very little danger of abuse. They go home when their hours are over and if they have problems, the company is legally bound to honor all exit clauses. In the case of a private visa, the sponsor is unaccountable, and the employees are strangers in a strange land, with no shelter except in the house of their employer. Which is why domestic workers the world over are so badly abused- there is no government authority to protect them, and they become prisoners in their employer’s homes without phone or internet access, and often without wages for months at a time. Sometimes even without food.
May Allah protect us all from such evil, such injustice from one human to another, and hear the prayers of the oppressed against their oppressors.
Scary. It’s so scary that I convince myself to abandon the entire business idea at least twice a week. I tell myself that I don’t need this accountability, this terror of being responsible for people that I can’t see, this nagging fear that something will happen to someone that I was responsible for, and they’ll be hurt or abused, or thrown into deportation where people lose their mind. But then Khalid climbs into my lap and gives me a kiss. Or asks to hold my hand. Or smiles proudly because he can add two plus three and he knows he got the answer right. And the cause of this progress is Allah, the Most Merciful, but the catalyst for this progress is Joy. She is there in the background, prompting, teaching, guiding Khalid through his program, working with him twelve hours a day with patience and epic perseverance- when Khalid is having a melt-down, it’s her he pinches and hits, because the principles of our behavioral intervention say I should walk away, and Joy should walk Khalid to the corner until he calms down.
I thank Allah for Joy, and I wish every family who needed someone like her could afford to have her in their lives. And when I have the ability to make that possible for children throughout the Gulf, it’s selfish of me to not to. I want for other families what I have myself- I want for their children what I want for mine- a future.
And I know what I don’t want- I don’t want children to be left behind because their parents don’t make more than twenty thousand dirhams a month, which is around 5,500 US dollars- and that’s how much families spend on average for a moderate ABA therapy regime. That’s moderate. Therapy starts at 50 dollars an hour, because it’s a highly specialized, one-on-one teaching model that requires repetition, repetition, repetition. A good ABA program is 40 hours a week.
Forty hours a week, a fifty dollars an hour. You do the math. You tell me whether only rich people have autistic children. And then tell me whether only their kids deserve a chance to learn their own names.
We switched autism centers recently, and it wasn’t actually by choice. We were failing to meet a ten-hour a week minimum for ABA therapy, and were only going for an hour a week for Joy to check-in with a senior therapist for any questions she may have had. We also saw the Case Manager- a behavioral psychologist- only on a quarterly basis- but because we had Joy at home giving Khalid ten hours a day, we were making phenomenal progress. Khalid didn’t need any more center-based therapy because he was getting all the intensive therapy he needed at home. And to be honest, we couldn’t afford to pay both Joy and the center’s ten hours. And I told the director very flatly- that if it came to a choice between Joy or the center, I would pick Joy, because my obligation as a parent was to Khalid, and to getting the most treatment for him possible with the limited resources I have. And I asked if they would keep us anyway.
And they said no.
And I asked what parents did if they couldn’t afford the ten hour minimum.
And the director said “They never begin services with us.”
I wrote her and the case manager an email asking her whether the center was there to support the children or the children were there to support the center. She has yet to reply. It’s been well over two months.
So we left. And we walked to the other center, right up the hall, and started with them instead. And I don’t like to name names, but I do want to talk about Stepping Stones Center for Autistic Spectrum Disorders. They have no hourly minimum, and if you tell them your budget, they’ll work very hard to make sure they can help you help your child in whatever way they can. And that’s why I will be partnering with them to provide home therapists to families who don’t have access to center-based therapy, either because there isn’t a center in their country- like Oman, Kuwait, or Bahrain, or because their center is so prohibitively expensive that it may as well not be there- like Dubai.
On a side note, insurance companies refuse to give a bent nickel for autism therapy. If Khalid got hurt and sustained brain damage, they would have to pay for his hospitalization. But he was born with brain damage, so we’re left on our own with no financial support whatsoever.
So, my name is Abez and welcome to my soap box. Give me a hand up, will you?
I believe that all children on the autism spectrum deserve a fighting chance at recovery, and neither financial status nor location should be a barrier to a child’s potential. If there is a limit to what a child can learn, let it be set by God, who created his or her brain and knows what it is capable of.
Please make dua for me, that Allah purify my intentions and make this endeavor a halal source of income, a good deed, and a sadqa jaariya for me. I seek refuge in Allah from shaitaan, and from the paralysis of fear, and from the lure of profit and greed, and I ask Allah to let this business be a help for children and parents in need. Allah, please protect my therapists, keep them safe and well-cared for, and let their experience in Muslim households be a beautiful introduction to Islam and the high standard of human ethics that You have set for Your slaves.
Ameen, Ameen, Ameen.