Written by Kitty Parlby
Thursday April 2nd 2015 marks the 8th annual World Autism Awareness Day. Around the world, autism organizations, parents, and individuals with autism will be recognizing the day with all kinds of events, from telling their stories, to fundraising, to showing support. As he turned 18 in November, this year will be our son Eric’s first World Autism Awareness day as an adult. So I thought I would share with you some of our family’s experiences in transitioning Eric from a child with autism to an adult with autism.
Knowing that Eric is within the severe range of the autism scale led us in a certain direction. The process is very individualized, depending on each person’s capabilities and skills. The first step for us was having an up-to-date psychological assessment done on Eric to document his capabilities, challenges, and his I.Q. This step was very important when it came to finding out what funding and supports our son qualified for. Next we applied for PDD (Persons with Developmental Disabilities). In Alberta, this funding model gives dollars for services provided to the individual, either through a community agency, or through family managed services. To qualify, you must have significant limitation in intellectual capacity and in adaptive skills (basic living skills). You must have had both of these limitations before you turn 18.
My advice; start this process when your child is 16 years old. When you qualify for PDD they conduct an assessment called the Supports Intensity Scale. This helped them to establish what Eric can and can’t do for himself, and how much support he needs to do each task successfully. They like to see people from different aspects of the individual’s life at this meeting (including the person with autism), all giving input to provide a well-rounded picture. This helps to indicate what services and supports Eric needs. Once he was approved for PDD, that meant that Eric would likely be approved when we applied for AISH (Assured Income for the Severely Handicapped), which gives him a monthly living allowance and health benefits. There was still more to be done. Currently and into the foreseeable future, our son will not be capable of making life decisions for himself, so my husband and I had to apply to become Eric’s guardians, for decisions like where he will live, what work he will do, medical care, his safety, etc. Likewise, we also had to apply to become his trustees, as he currently is not able to make financial decisions for himself. Usually a family member or close friend becomes a guardian and/or trustee. If no one applies to fill this role, the Office of the Public Guardian takes on this responsibility at the age of 18. Whew! After a very stressful year and a half of meetings, assessments, applications, and interviews, we now have PDD and AISH for our son, as well as trusteeship and guardianship of Eric.
People all along the way did their best to give us assistance with paperwork, advice and encouragement, but it is just a very long, multi-faceted undertaking. Are we done? Not at all; now begins the task of helping him to build a life. What kind of life? As his last year of high school comes to a close in June, how will his days be filled? I want him to be happy and be doing things he enjoys, but I also want him to be a contributing member of this world in some way. If I ask him what he wants to do when he is finished high school, the answer is ‘screen time’ (playing games on his computer and surfing the net). Interacting with people isn’t easy for him. Speaking, asking and answering questions, even a bit of eye contact would be expected; all of these are difficult. Also, there’s always the chance that people might touch him. Any touch can be painful for him, as that is his number one sensory issue. Knowing all this, do we let him completely choose what to do with his life? Here begins a discussion of philosophy and ethics around autism, and indeed around decision making for any child turning adult who lacks the capacity to make decisions for themselves.
Every family has their own ideas of what makes up a worthwhile life. Is it happiness alone? Is it being productive too? Is it striving to fit in? How about making your mark on the world? I can only speak for myself. I believe it’s all about balance and capacity. I would like Eric to do some of what he’s capable of, with all the input he’s able to give me on what that should be. People don’t always do everything they’re capable of. We all pick and choose what we want to do, considering our options (our skills, how to make a living, a balance of fun/family time). I would like Eric to have a little involvement with a few people. Given the social challenges that come with his autism, I’m not going to sign him up for a bunch of activities and clubs, but we should all stretch a little out of our comfort zones, in order to have opportunities for growth. Do I want him to be as independent as possible? Of course, but I need to look at that through an ever-changing, hopeful, yet realistic lens. After 18 years of being his mom, I have a much broader view. It no longer bothers me that he can’t make friends the same way we make friends, or that he can’t stand the touch of most people, or that he won’t actually ‘graduate’ from high school, or that he most likely won’t marry or have children. There’s so many other ways he adds substance and quality to life. Do I worry about him fitting in or being seen as ‘normal’ as possible? Not a bit. He will find his own unique place, and give those around him a fascinating glimpse into other ways of experiencing our world. That’s a gift I value highly! As we were looking ahead to his future, the school and I arranged for Eric to do work experience during the afternoons for the past 2 school years. He has gained skills at many clerical tasks, like shredding, sorting mail, laminating, using a postage machine, scanning documents and maps and then saving the file, counting inventory, filing, stocking shelves, and more. Most of these are highly repetitive tasks that require some focus. Once you learn what the task is, you can complete it on your own without much interaction with other people; perfect for Eric. Whenever asked, Eric says he likes going to work experience. So that’s where we start. We find a job (or two jobs) for him that cover 4 afternoons a week, from 1 to 4 pm. That much he can manage, and even somewhat enjoy, once he’s familiar with a place and a few people there. His PDD funding will allow for a community worker to be with him the other parts of the days, which we will fill with volunteer work, physical activity, community involvement, and perhaps other interests he might gain as time goes on and opportunities arise.
I’m also looking at starting an activities/social group in our area for young adults. Ideally this would be a group with a mix of special needs and typical young adults, meeting perhaps twice a month. Although social interaction is not easy for our son, if we can ensure that a good dose of fun goes along with it, I’m hoping Eric will consider it well worth the effort. We’ll see. As for living arrangements, Eric has chosen to continue to live at home. We are prepared to honor his wishes. If the time ever comes that he would like to consider living elsewhere, we would fully support him in that as well, and would start looking at local supported residences. In the meantime, part of his PDD funding allows for him to spend the odd weekend at a respite home, with fun activities and relaxation time. Respite is intended to give a parent a temporary break from the full care and supervision needs of their family member with a disability. In my mind it also is a chance for Eric to experience some independence from me, as he is overly attached. I am currently transitioning him (step by step) to the idea that he can have fun, be safe and even sleepover at a place where mom is not present! Well, that’s where we currently stand.
His future seems wide open to me. Not something we plan and stick to, but a fluid and flexible guide that changes as he communicates his wants and needs, as his skills grow, and as the world changes around him. How lucky we are to be taken along on his ride!
Besides being Eric’s mom, Kitty Parlby has presented autism workshops for years, works as an Educational Assistant with special needs children, and is a board member for the Autism Society of Alberta. She also spent 5 years on the board of governors for Aspire Special Needs Resource Centre. She can be contacted on Facebook.