What will happen to my child when I die? This is a question that haunts every parent—who will my kids live with, will they be financially stable, who will be their mentor as they transition into adulthood? We want it to be Aunt Mary because of her values, but she lives across the country, and that would be too much change. We are not as confident in Uncle Joe but he is more involved in our kids’ lives now, and there would be less upheaval for my children. And the dilemma continues. However, for parents of children with autism, the question is almost insurmountable, and this is why independence is crucial for families with autism. Especially since the conversation goes more like this:
Aunt Mary couldn’t take my son even though she is great with him because, if he moves states, he will lose his public funding. He cannot stay here with Uncle Joe because he has an infant and my son is too aggressive around babies. The only residential facility I would even consider for my child has a two-year wait list.
While it would be easy to get depressed about this, we cannot afford to avoid this issue as parents or as a community. Children with autism become adults with autism whether we plan for it or not so let’s address it!
Helping Your Autistic Family Gain Independence
Parents, you constantly have to keep your eye on the end game which is to be continuously working on as much independence as possible for your child. It is easier and cleaner for you to help your child take a bath or shower, but at what age are you going to stop doing that? Do you want someone else helping your child take a shower when they are 22 years old living in a group home? Every parent I ask that question to, of course, says “no way”, but they do not realize that this means things have to change NOW, not later. The more independent your child can be in self-care skills (bathing, toileting, grooming skills like brushing teeth, hair, shaving), nutrition and eating (preparing own meals, shopping for the grocery list for the week, choosing a variety of healthy foods), and leisure skills (entertaining themselves appropriately for periods of time), the more options they will have for adult living options.
Essentially starting at the age of 10 years old, independence needs to be the goal in the areas I mentioned above. We know that our children become adults in a blink of an eye. For every child, that level of independence is going to vary, but it needs to be every parent’s focus in their daily routine.
- Yes, it takes longer to get out the door in the morning.
- Yes, grocery shopping can take longer if your child is finding his own list of things.
- Yes, you need to start bedtime routine sooner so they can practice the skills, but the alternative is not pretty.
An adult who cannot manage his self-care needs, cannot prepare his lunch to take to his job or day treatment facility or cannot safely entertain himself will have fewer options, which currently would mean an institution like setting.
SO PARENTS, LET’S GET WORKING!
Resources to Help Autistic Families with Independence
There are a few resources out there to help you get focused on your goals for transition. The first is called the Community-based Skills Assessment which is a free download from Autismspeaks.org. It is a wonderful tool to help you decide areas of focus. The second is the Assessment of Functional Living Skills found at partingtonbehavioranalysts.com, which does cost money, but is an excellent resource for honing in on specific skills that will help you reach your end goal of community immersion for living, playing, and working. It can help you create specific treatment/education goals to work on NOW not later.
The next article will be on how the community needs to be a part of this reality of our 1 in 68 becoming adults. We need to be a solution because the Houston community needs to realize that autism does not just affect 1 in 68; it affects all of us in one way or another.