Autism Facts – My first memory is of the day that my brother Willie was diagnosed with autism. Specifically, I remember waiting in the playroom of a diagnostic center, surrounded by shrieking toddlers and jungle gyms. I was four years old, and Willie was two. When my mother came out of Willie’s appointment, she was crying. I didn’t understand her tears, but I held her. I didn’t understand what was happening, but I knew that something significant had occurred. I knew, in a way I couldn’t express, that my life was going to be different from that moment on.
What is autism disorder?
Autism is actually a broad categorization; the ‘autism spectrum’ is a set of disorders of varying degrees. Some people on the autism spectrum cannot live independently, and some need relatively basic supports. Classic autism is characterized by communication difficulties and social challenges; as such, communication and social supports are often essential. There is no definitively established cause for autism-spectrum disorders, though genetic components and environmental factors continue to receive scientific scrutiny. What has been established is that the autistic brain lacks connections between neurological areas; thus, it’s much harder for people with autism to make certain connections. For example, making the connection between a facial expression and what it signifies is a particularly difficult one for people with autism.
It’s also important to note that autism is different from intellectual disability. Though many people with autism are diagnosed with an intellectual disability, autism can occur in persons of varying degrees of intelligence.
My brother exhibited the classic signs of autism in toddlers. These signs include (but are not limited to): repetitive behavior, lack of eye contact, a withdrawn state and a sudden lack of verbal communication at or after age 2 (whereas before, he’d been talking and progressing normally.) Signs of autism typically appear before age 3, and this was the case for my family.
Often, there’s a sense of loss and deep disorientation when a family member is diagnosed with autism. You ask questions that have no definitive answers: How did this happen? Why? What does my brother/sister/son/daughter have to look forward to?
For families who have just received a diagnosis of autism, here are some steps to take:
1. Reach out. As my mother reached out for me after my brother’s diagnosis, you must reach out to others. Autism spectrum disorders now occur in approximately 6 in every 1,000 children, so you and your family are most certainly not alone. It can be tempting to isolate yourself once the initial shock has faded. For the sake of your family, resist this tendency. Reconnect with trusted supports, and find new ones as well. If you don’t know where to start in your process of reaching out, it’s wise to…
2. Learn all that you can. There are a myriad of excellent websites, organizations and support networks available to you. Autism facts abound. After the initial diagnosis, it may feel as though you have millions of decisions to make. What therapies will you try? What schools will you select? Give yourself the grace of time to process, time to learn about this new aspect of your loved one. As you educate yourself, begin using person-first language. For example, I used to say, “My brother is autistic.” Now I say, when necessary, “My brother, Willie, has autism.” It’s a subtle yet significant difference: in person-first language, my relationship to this person (my brother) and his name come before their diagnosis, and the diagnosis does not define the person. Likewise, during this time…
3. Remember that your family member is a person, not a statistic. They are who they have always been: a unique individual, with gifts and contributions to offer. My brother, for example, has a rich and varied sense of humor, a great capacity for memorizing data and strong musical abilities as well. A formal diagnosis of autism need not be a fearful thing; rather, it can help you to understand and support your family member in new ways. Though there will be times of difficulty and struggle, there will also be times of gladness if you choose to love one another. During this time, it’s also vital to…
4. Realize that you cannot know what the future holds (and it may be brighter than you can imagine at present.) One of the most challenging aspects of an autism diagnosis is the loss of an imagined future for your child. To keep your outlook positive, look into organizations like L’Arche USA, a non-profit organization that creates homes in which people with and without disabilities live together in vibrant communities of faith. Visiting places like L’Arche allows you to get a glimpse of what your family member’s life could look like in the future.
As you journey forward, may each step your family takes bring you closer to one another. May every choice you make bring us closer to a world where people with disabilities are included, supported and valued.