Autism and the ultimate goal: independence

Liz Becker


Navigating autism takes time – lots and lots of time. It took until Matt was almost 5 years old for speech to come, and then it was very few words for years after. It took almost 7 years to get out of diapers and almost 9 to completely be potty trained without the occasional accident. It took until he was almost 7 years old to get use to a change in routine, to age 12 to agree to try a new food item, and he was somewhere in his early teens when he started to pick out his own clothes. Autism slows down progress, but the good news is that it doesn’t stop progress. Doing something new just takes more time to learn.

I was never in a hurry – except for speech. Speech has a window of opportunity, so we pushed him to speak. Matt saw a speech therapist from his diagnosis at two and a half years old to his day of graduation from high school at 19 years old. Everything else was mostly accomplished with a bit of steady pressure and a great deal of time. Matt was given equal time to flap his hands and spin his toys and time to focus on learning something new.

Now that “something new” is the move to a place of his very own and a chance at independence. This has also been a long time in achieving. My oldest son, Christopher, bought a house before he moved away. My step-children, Jacob and Sarah, both got married before they moved to their own homes. Matt has been a witness to these changes in our family dynamics. He wants his own place too. I call this Matt’s “ultimate goal.” He has talked about it out loud to himself over the years and each time he does his voice is excited and full of energy. He craves it. Living on his own will mean he is in charge – something he needs to make himself feel “normal.” Matt has never liked being autistic. To put it bluntly, he hates it. He hates that he is different, that people view him differently, he hates that his speech is not … normal. He hates that he has difficulty understanding communication nuances. He doesn’t want people to know. Finding a way for him to accept it as a part of him has been a very difficult task. We are still working on it.

“Autism does not define my son” – a nice little phrase I have read a thousand times on blogs and social media pages. Unfortunately, yes it does. His autism characterizes his speech, his habits, his way of thinking, and yes, it characterizes his daily life. Matt is “more than his autism” – also a nice popular phrase – and this one is a bit more accurate. Matt is talented (his artwork is astounding), compassionate, friendly, intelligent, and easy to be around. He has a laid-back style that invites interaction. Then his autism makes those interactions difficult and sometimes scary. Social interactions and communication difficulties identify Matt as “different” and Matt hates being different. He wants to blend in – but can’t. He wants to hang-out, go places, do the things that other people do, and he tries his best to be just another guy, he really does, but he is aware that he is different. Social interactions are very hard. He knows he is different and it hurts him. If it hurts Matt, it hurts me. Autism is apart of him – the only part of him he dislikes. Moving to an apartment is a wonderful goal but for Matt it’s so much more than just gaining some freedom – it’s also a way of trying to shed some of his autism.

Moving out is a complex task for the autistic individual. It’s not as simple as packing your bags and going out the door. Moving out is another step toward independence, and because of his autism it takes time – lots and lots of time. Preparing for independence requires Matt to be able to care for himself. Over the years he has learned to do his own laundry, make his own meals, shop for himself, dress himself, take care of his personal hygiene, feel at ease at the dentist office, keep track of his finances, use a cell phone, and not freak–out when problems arise unexpectedly. He still needs to be able to talk to his doctor, tell someone when he is ill, seek help when needed, dress appropriately for the weather, be aware of his environment and foresee consequences of his actions and various situations. We all learn from our mistakes as we navigate our independence. These past several years Matt has had practice with each of these while in the safety of our home. He has learned much, and continues to do so. Yet, I know that most of what he will face alone can only be practiced after the move. It’s scary for me… but not for Matt. Matt is ready to take the plunge and believe it or not, I am ready to let him – scared, but ready. The years have flown by – where did the time go?

To prepare for this I had made myself a goal. I set this goal when Matt was between 10-12 years old. I saw that his autism was dynamic and changing, he was not stuck flapping and spinning, he was not forever echolalic or stuck in a specific routine. Matt was talented, able to learn (graduating number 4 in his class), he was brave and determined and he was compassionate. Maybe that doesn’t surprise you, but it did me. I was advised to institutionalize my son at age two. I was told he would never be able to do the things he does now. That was in 1988. Parents today know better, but back then we were fighting against all the odds at a time when autism was only 1:10,000. We were going it alone – there were no other parents to talk to, no specialists to see, no new ideas to research on how to teach, raise a child or cope with the stresses that came with the diagnosis.

When I realized Matt could do so much more than anyone predicted I began thinking about the possibility of independence. It took several more years to convince myself that yes, he really could do it. I then set a deadline – something to keep me focused on his progress, nothing more –and that deadline was before Matt turned 30 years old. This was a huge step, just to consider the possibility. It also seemed far enough away to prepare him for the challenge and long enough for me to get use to the idea. Matt will soon be 27 years old, and the “ultimate goal” deadline is looming closer. For the first time since his diagnosis I actually believe all the way to my soul that he can do this. Matt made me believe.

Next summer I will be looking at apartments, researching adult disability services and transportation options. No group homes are on the table. First – the closest adult autism services are several hundred miles from here – not an option. Second – Matt does not want to be with other disabled adults because he is trying to get as far away as possible from any reminder of his own disability. He would never allow it. Matt needs an apartment, close to shopping and he needs transportation. He may need a social worker to oversee his healthcare and living arrangements, but most importantly, he needs me to understand his need to be as independent as possible. It will be a slow transition. He will have either my husband or me staying with him 4-5 nights a week at first. Then we will cut down on the number of overnight visits to 3, then 2, then 1. It will take time…lots and lots of time. Taking our time to work on each aspect of his autism has worked pretty well thus far. We are in no hurry. We want him to be as comfortable as possible and transition into the realm of independence slowly, flattening out those bumps in the road as we find them. I am very proud of my son for the determination and courage he displays as we move toward the “ultimate goal.”

Recently, Matt said to me in a very serious and determined voice, “I will have my own place. I can do this!” He wasn’t just affirming to himself that it was possible. He had directed the comment at me. Matt was assuring me it was possible. I believe him. Only time will tell if Matt can really handle independence, but I know that if we take it slow and easy the chance of success is pretty darn good. It’s time for me to start letting go. It’s amazing to just picture Matt in his own place, knowing what he had to overcome to get to this point. It's true - nothing is impossible. Navigating autism just takes time.


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