Questions about residential living arrangements and autism

So, you feel both anxious and excited.  Your autistic son will be moving to a community living facility.  You have taught him the basics of taking care of himself.  For several years now, he has been responsible for washing his own clothes, making his bed, and eating a healthy diet.  You hope that the move will provide him with a new environment; one where he will grow and enjoy being himself. More than anything, you are hoping that he will be happy.  Still you ask yourself whether this is a good idea?

People ask me about the benefits of residential living arrangements for autistic individuals. In this day and age, parents preface their inquiry by asking about “evidence-based” benefits. They would like to make an informed decision based on objective evidence. However, like many other questions that I receive about autism, the answer may be rather complex. You see, autism is not defined by one single symptom regardless of how severe the same may be. It is said that autistic individuals are like snowflakes, each person being different from everyone else.  Trying to define a homogeneous population of young autistic adults going into residential programs may be difficult, if not impossible.  And what would you compare this group to? Autistic individuals going into residential living arrangements versus a group comprised by those that remain with their parents may have experienced circumstances that amply differentiate the groups before any outcome measures are taken.  It is like comparing apples and oranges.  Furthermore, for how long would you have to follow-up such a population before claiming credible results; one month, six months or a year?  Considering that autism is a life-long condition, any finite term makes conclusions from any longitudinal study debatable.  In the end, I think that these comparisons are fruitless.  If the experience promotes the joy of the patient, I think it is great.

Given the opportunity, I do recommend community living arrangements for those that have it available or can afford them.  There is no one treatment protocol that will benefit all autistic individuals. For those who receive outpatient care, treatment is delivered in a piece-meal fashion. Progress is slow under these circumstances. By way of contrast, community living arrangements provide for an immersive experience for social living in a controlled setting.  For many, it is the next step forwards towards independent living. Indeed, some residential programs provide assistance with housing, employment, education, and financial assistance that make future transitions towards independence possible.

My feelings about residential living is colored by my experience while visiting an autistic community in Spain, called Mas Casadevall.  This is a small city north of Barcelona that is run by autistic individuals. The Foundation that runs Mas Casadevall attends to the medical, educational, legal, and employment needs of young autistic individuals with the aim of improving their autonomy and independence. It is easy to see that autistic individuals working at Mas Casadevall are happy with their lifestyle.  In talking to some of them, one of the major benefits of communal living was the building of friendships that lasted a lifetime.

Proximity, costs and health insurance coverage are major issues when considering residential living centers.  However, additional considerations include:

What is the treatment/education philosophy of the Center?

Is it an accredited facility?

Is there a medical provider affiliated with them? Is there a 24 hour on-call schedule?

What is the patient to staff ratio?

Does it provide for individualized treatment plans?

Do they develop transition plans for aftercare?

Is there a case manager to oversee the care of your child?

Do they specialize in a certain age group?

Will they be able to meet the medical needs of your child, e.g., comorbidities?

I am a keen supporter of residential centers for autistic individuals.  They usually take advantage of the communal setting in order to provide group therapy.  This approach provides peer support and a sense of “belonging” among the participants.  It is useful to inquire whether such group sessions are closed to members of the community or open to anyone (e.g., visiting parents).

Reference

Casanova MF. Autism Updated: Symptoms, Treatments, and Controversies. Amazon Publishing, Co, 2019.

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