One of the difficulties of full participation is a general lack of understanding of what it means to have a developmental disability. While people are open to the idea of full participation and understand the tremendous value it brings to communities, many do not take the time or the opportunity to understand why people with developmental disabilities may look, act, speak, or move in a certain way. In any environment, lack of knowledge and close-mindedness can lead to contention. By simply taking a moment to understand what a person is thinking and feeling, how they handle certain situations and why, it will be easier for those with and without developmental disabilities to interact. In addition, those with developmental disabilities should also be aware of their own limitations. This does not mean that they shouldn’t set goals or challenges for themselves, but for their own safety it is important for them to have a realistic understanding of the environment in which they live.

The following letter was written by a young man with autism and mental retardation. It provides valuable insight into his world and provides explanations for why he may act certain ways and how he is learning to fit into his community. This young man’s effort to be understood shows that the more we are able to be aware of each other, the better we will be able to interact together.

I like to maintain a schedule through out the week that doesn’t vary. People think because I can’t communicate in words very well, that I don’t understand. I get agitated and anxious when people don’t take the time to tell me when there is a change in my routine. I like it when people take the time to tell me exactly what we are doing and why we are doing it. They do, however, need to get a verbal okay from me so they know I understand.

I hate to get my head wet and particularly dislike showers. The water often rushes out of the showerhead too fast onto my skin, which is very sensitive not only to the hot and cold, but also the beating of the water makes my skin hurt. I often resist and will run into the other room if anyone even mentions washing my hair. In order for me to cooperate you must explain what you are doing and how you are going to do it or I will stiff-arm and push you away and say no. I do love to take nice hot soaking baths. It feels good on my skin and helps me relax. I do take showers, but prefer baths. I like to take my bath every night after dinner and don’t like this routine to vary, because I look forward to this relaxation at the end of the day.

I love to ride in pick-up trucks, buses, and cars that shift gears manually. I like the sound of the gears shifting in the motor and often imitate those sounds as I ride along.

I also like the swishing sound of the washing machine, the hum of the dishwasher and the roar of a lawn mower.

I like to listen to most kinds of slow and easy music. I especially like Neil Diamond. Since I process sounds very slowly in my brain Neil’s music is easy for me to understand. I also interact with people through music. Singing is fun and easy for me because I can repeat the same words over and over again and don’t have to worry about finding words I can’t retrieve to make conversation. I often get very involved and act out a scene or sing at the top of my lungs at certain points of my movies or when a familiar tune comes on the radio.

I love the outdoors and in nice weather I like to go outside and sit on my porch swing and eat my popcorn, drink a coke, and flap a good belt up and down in the air. I can sit for hours enjoying the sunshine and warm breeze on my skin and listen to the repeating sounds of nature. This relaxes me and releases the built up tension in my body.

I like to sit in my room in the dark and watch TV and listen to music at the same time because the overhead light or lamplight is often is too bright for my eyes. I love to sit and listen to the same song and maybe the same segment of a movie over and over again for hours.

Since I have trouble expressing my feelings verbally I often show my displeasure when someone invades my space by physically pushing them away, holding out my arm, or if someone invades my space too fast I used to throw something at them to stop them in their tracks, but now I have learned to just keep moving away. I have to approach people in my own time and in my own way to feel comfortable. I often hover, jump up and down, chew on my thumb or run into another room if I feel scared. To allow me to approach you gives me time to adjust without causing me tension or anxiety. I get very anxious if I see someone at work, at home, or in the community that is not in his/her regular space.

Most of the time I am an affable, pliable young man. I do, however, express myself when I get upset by biting the tops of my hand and jumping up and down in place and telling you if we are out somewhere in the community “Go get in the Car!” In crowed places it is hard for me to tune out all the sounds at once, but I have learned however, over the years to adjust to displeasing sights and sounds. I like to go places now in the community and see new things and experience new adventures. If I do get too agitated, I can be calmed down by having my back rubbed, being read to or holding my Cascade Detergent box up to the side of my face. The rubbing releases built up tension, the words of my books bring me peace and the box acts like a security blanket. The box also blocks out sounds and keeps people at bay until I can adjust to new situations.

Please know that I appreciate any effort that is made on my behalf to understand who I am and how I react to the world around me.

Thank You. Thomas

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