By Mary Ellen Bogucki
Often times you hear the terms high functioning, low functioning, mild, moderate or severe when people talk about the degrees of severity with Autism. We too, have heard these terms used when describing our daughter, Bree. Unfortunately, these terms can cause even more misunderstanding of the disorder, as people tend to form their own opinion of what they think the term means. There was a time, Bree had no meaningful speech and only spoke jargon. She eventually developed repetitive speech, but still lacked any expressive language. After years and years of therapy, she is now considered “high functioning”. We found that the more “high functioning” Bree became, people seemed to think she shouldn’t have autistic behaviors anymore or that those symptoms just magically disappeared, when actually she just learned how to cope better. Then there were the people who liked to believe she never had Autism at all. They had no understanding of where she began, what she went through to get here and how lucky she was to have therapy that helped her progress.
Unfortunately, because Bree tried to fit in and model her typical peers, on those days that she was acting like her true self, she would be scolded and told she was doing something wrong. As I stated before, faking typical exhausts her and sadly I have found myself guilty of expecting her to not behave as if she has Autism. The fact is, she can do amazing things and accomplish more than I ever dreamed. Although, there are times that her Autism, anxiety and OCD stand up and yell “Hey, what about us, we are still here and you better not forget us!!” Those behaviors and challenges resurface and sadly people don’t know or have forgotten how to deal with them. Recently, I was reminded of this, and my daughter offered me some amazing insight into what it is like for her, living with Autism. Yes, I was schooled yet again and I hope my lessons learned can help some of you as you travel through life with your loved one.
There are so many behind the scene occurrences that happen with our kids, things that most people never see or know about. Things like medication changes, therapy sessions and the stress of maneuvering through a world our kids struggle to understand. Just the other day, my daughter had two big events she needed to attend and I already knew she doesn’t do well when she has back to back activities. Even knowing this, I committed her to both of them after she agreed to go. They were two important events, which meant a lot to both of us, so off we went.
The first event involved taking the train into Chicago and participating in a 4 hour program. Just taking the train can bring anxiety, because people are moving quickly, crowding her, and trains are loud, but she handled herself wonderfully. By the time the event ended, she let me know she was becoming overwhelmed. She was able to regain her focus and although tired, she was willing to move on to event number 2. She told me how much she loved seeing her friends at the first event, but she worried she may have seemed rude as she became overwhelmed. I told she did great and that people including myself just need to remember she still has challenges and Autism, even when she may appear not to.
As we entered the second event, I immediately forgot the words I just spoke. We walked in and she instantly was met with loud noise and lots of people. I’ve learned that entering an atmosphere that is dimly lit and crowded can also cause her distress. I believe it adds to the confusion already bombarding her senses, because now she struggles predicting how the crowd may react. This is scary for her, because she can’t process their movements, especially when the area is dark. Her vestibular sense that deals with movement has always been greatly affected. Within minutes of arriving, she went into shut down mode. She was in a fight or flight and wanting to run. I of course wanted her to continue with our plan to help our friend with his event. I was asking her to not have Autism, to fake typical. Her solution was to retreat to the bathroom where it was less crowded and she basically hide.
After some time, she emerged feeling somewhat more settled, but still not herself. She saw our friend, who is one of her favorite people and the reason we were there. He gave her a big “deep pressure” hug and calmed down her raging senses. As time went on, the event became even more crowded and another friend arrived. I could tell it was becoming too over stimulating for her. Her body language was tense and she would only talk to those people she felt most comfortable with. I began to see the confused, disappointed expressions on those who tried to interact with her, when she would only answer with one word or not at all. I reminded myself that she still had Autism and what I was asking her to do was a lot. I suggested it was time to leave. She looked at me and said “I like them” and motioned to her two friends. It made me sad, because this was her clue to me that she wanted to try and stay even though she was struggling. We stayed a little longer and her behavior became more obvious. Now, when people approached her to talk, she would immediately walk away. Or, when they asked her questions, she stared blankly out into space. I could see the misunderstanding that her behavior was giving off and I tried to explain that the environment was just too much for her to process and handle. I told her I knew she wanted to stay and hang out, but it was probably best that we go.
On the drive home, after she decompressed a little bit, she told me it was so much stimulation in one day. She had already been bombarded and could no longer handle it. Bree wanted so badly to stay there, because of her friends. We talked about how she immediately went in to shut down mode upon arriving and how she felt that I seemed to forget she has Autism. She was upset with me for forcing her to immediately overcome the situation. Bree was confused as to why I didn’t understand her struggle. We also discussed why she would walk away from people or stare off into space when they talked to her. She told me she asked herself why she was doing this. She said she realized that staring off allowed her to block out the outside stimuli bombarding her. It was a much needed escape. She could escape in her mind, without physically escaping and when she felt more relaxed she could check back in. We talked about how for so long we never understood her meltdowns, her running away from us in crowded shopping centers or theme parks. Yeah, we read the books, theoretically we knew why, but we didn’t truly understand. Bree explained this was a processing issue. She went on to tell me, “My mind just can’t process all the information coming in and I need to find a way to escape!”
Finally, so much of what we had read made sense on all levels of Autism, from times when she couldn’t communicate to now. I realized I need to always remember, she learns to cope, but she is not cured. She will always have these challenges, but we both need to learn how to respond in certain situations. If I had just took her outside for a walk, it most likely would have helped her and not escalated as quickly. Maybe having a plan going in, a one or two word sign that she needs to step out. I need to learn when to say to people, Bree truly wants to be here, but we are taking a quick step outside and will try again in a few minutes.”
Bree will soon be 21 and although she makes huge strides and amazing progress, we both are still learning. I do believe Bree is becoming her best advocate and the more she can communicate and describe her Autism the more we can help each other. My hope is that by sharing our experiences and knowledge, maybe we can help someone else to better understand their loved one who is unable to communicate or describe how they are feeling.
Mary Ellen Bogucki is the mother of Breanna (Bree.) Bree is a twenty-year-old college student, runner, singer, special needs advocate, Special Olympics athlete and Global Messenger. Bree has been diagnosed with high-functioning Autism, OCD, anxiety, situational depression and sensory processing disorder. Follow along as her mother describes where Bree began and how she arrived where she is today. Mary Ellen will explain what helped Bree improve, along with some mistakes they made on their journey. By telling their story, they hope others will find hope and comfort. Bree currently is attending Harper College in Palatine, Illinois pursuing an Associates Degree in Human Services. She is a member of their Cross Country and Track teams and the President of the Access and Disabilities Success Club. Harper College offers a Transition Autism Program (TAP) to help those with Autism transition from high school to college.