Guest Blog by Caryl Anne Crowne of Aveanna Healthcare
Learning that your child is autistic can be a blessing. Answers to behavioral issues are finally apparent and steps that need to be taken are revealed. However, this is just the beginning of a long road to travel, not just for parents, but for siblings. Understanding this condition and how it should be managed affects an entire family.
Children have a limited ability to understand actions that are not similar to theirs. The age of a sibling should be taken into consideration instead of grouping different ages together. Single out the age categories and take it slow. According to Jean Piaget, developmental psychologist, there are 4 stages of cognitive development according to age. Below we will look at three of these stages and how to handle the conversations by age.
Children under the age of 7 are unable to process certain information due to inability of in-depth logical thinking. Using examples of their experiences works best in sharing why their brother or sister is different. Stress that it is no one’s fault, that there is nothing to fear and that they may not be able to talk to you right away.
Ages 7 to 11 are when logic begins to emerge as a form of thought process. Experiences are still stubbornly linked in their minds so using a combination of experiences and logic should be used. Watch carefully to their reactions to know which way is the most acceptable. Explain that their autistic brother or sister has to try very hard to learn, but they can help by showing them things and playing with them. However, your child should know that their autistic sibling is not their responsibility. Always get mom or dad if they become aggressive.
Kids over the age of 12 are inclined to think like adults and do not have to have a previous experience to grasp knowledge. They will be more inclined to understand events of their autistic brother or sister when the facts are explained. You can go into more detail with this age group by explaining that autism is a problem in the brain that happens before birth. Stress that other people may not understand, but you can help to provide answers.
Stress Around Friends
Emotions can run high with siblings of an autistic family member. Begin teaching your children early that others with no experience may never completely understand and that is okay. Encourage siblings to share any embarrassing moments and how to handle these moments.
Forming Family Relationships
Autistic children require a lot of special care. The other children may see this as special treatment and get disgruntled. Your explanation of providing extra time may not be accepted at first, but including everyone as a family will soon change that. Also plan time with each one of your children to let them know that they are valued by you.
Acceptance of an autistic sibling into a family takes time and patience. By reinforcing their condition time and time again, autism can be physically and emotionally welcomed by siblings. Communication is key in bringing the right attitude to siblings in regard to an autistic child. It is not unusual for parents to feel responsible for adding this burden onto siblings. When a sibling reaches the age of reasoning, share your thoughts and praise them for the amount of help that they have offered. Autism is an issue for the entire family to share.
Caryl Anne Crowne is a media specialist and contributing author for the Aveanna Healthcare Blog. She regularly produces content for a variety of pediatric therapy blogs covering topics such as autism, speech therapy and general medical solutions.
By Patty Pacelli
As our son Trevor reached about 18 months, we noticed he had stronger than normal reactions to certain happenings in his day. He got extremely upset at anything that interrupted the schedule that he had formed in his mind. He couldn't verbalize his feelings or thoughts at that age, so he would cry, scream and throw himself on the floor. Even when he became more verbal, at about 4, it was still difficult for him to explain what was wrong, and to control his emotions. He exhibited these behaviors in settings such as church and preschool, so on the way to church in the car we would coach him and have him repeat, "No yelling, no hitting, no falling down." We aren't sure how much that helped, but he remembered the words.
At the time, he hadn't been diagnosed with anything other than speech delay, so we didn't know for sure what was causing these behaviors. We later learned these were early signs of autism. The difference from his older sister's behavior at the same age, was that he had different reasons for the tantrums, and less communication about those reasons. He got especially upset when something didn't happen the way he expected. It was so upsetting to him that he would throw himself on the ground even if it was something he loved, such as going to the zoo.
The other big reason for his tantrums was being forced to switch quickly from one activity to another. Most kids that age love surprises, and distracting them from one thing with another is usually a good strategy to keep them happy. It was the opposite with Trevor. He had to have a lot of warning about any changes, and still was sometimes upset. He explains in his book, Six-Word Lessons on Growing Up Autistic, in the chapter, Sudden Changes are a Big Challenge, that he often had his whole day planned out, even as young as 4 or 5, so anything that changed or interrupted that was extremely upsetting. These reactions also sometimes led to occasional hitting, toy-grabbing, or other rude behaviors toward other children.
Trevor's Dad, Lonnie Pacelli, created a one-minute video about the importance of keeping a schedule for people of all ages with autism spectrum disorders.
Because of these extreme reactions, and the reasons for those reactions, combined with the speech and language delays discussed in a previous blog post, we were not surprised to receive the diagnosis of an autism spectrum disorder when Trevor was in kindergarten.
By Patty Pacelli
Between about 18 months and 2 years, we noticed our second child, Trevor, wasn't talking as much as his older sister had at the same age. Everyone told us, "boys are slower," and not to worry. But the bigger concern to me was that he didn't seem to understand what we were saying to him. When we asked him if he wanted to do something we knew was fun for him, we didn't get the expected excited head-nod and feet-kicking, or even a "yeah!" He just continued on with no reaction.
Trevor's first year of life seemed fairly typical, and he met most of the normal milestones, such as smiling, cooing, gurgling, laughing and clapping his hands. He was right on schedule with crawling, sitting up and walking. The earliest signs of something not typical with our baby were his delays in language comprehension and speech that started at around 12 to 18 months.
At Trevor's 2-year medical exam, the doctor asked how many words he had in his vocabulary. I could only think of about 3 one-syllable simple words, plus a few words we didn't understand, like "Kood" and grunts that we jokingly referred to as "speaking German." I thought back to our older daughter's 2-year checkup. She was speaking in complete sentences with a seemingly unlimited vocabulary. The doctor said that at 2 years old, a child should be putting two words together to form an idea, usually a noun and a verb, and because Trevor wasn't doing this, and had such a small vocabulary, he had some delays in speech and language and could benefit from immediate therapy. He mentioned autism as a possibility, but knew that the therapy could help shed light on that, while helping with the issues we already knew about.
I started taking Trevor to weekly therapy sessions with a wonderful young woman who taught and modeled for my husband and me how to use play time and everyday situations to improve his language and overall communication skills. We were assigned a certain amount of interactive play with Trevor. This meant sitting down on the floor with him and directing his play with toys such as Lego figures that could interact with us and with each other. All of this involved using language. We also were told to increase his vocabulary and use of language by always adding a word to whatever words Trevor said. If he saw a fish at the aquarium and said "fish" we would say, "Yes, fish swimming" and try to get him to repeat that and understand what it meant.
During this time, he also started repeating what we said, rather than answering the question. We learned this is called echolalia and can be a sign of autism. This repetition continued until he was about 5 or 6, and grew to include lines from TV shows, videos and movies that he memorized. It became quite entertaining as he would use these phrases to answer questions from anyone, sometimes they were appropriate, sometimes not. This phenomenon is explored in the documentary film, Life Animated, about a boy on the spectrum who memorized Disney movies.
The therapy expanded over the next 3 years to include role-playing conversations, using diagrams and pictures to help communicate social skills and building his vocabulary and comprehension. When he had just started kindergarten, he was diagnosed with an autism spectrum disorder and was put on an Individualized Education Program (IEP) which allowed him to continue with speech and language therapy provided by the public school.
Trevor made great progress in his speech, language and comprehension thanks to the actions we took in his first few years of life. He is now 24 years old and has graduated from college and is a prolific book author and film reviewer. My advice is to keep getting professional advice and devote yourself as much as possible to helping your child with any delays. Don't listen to people who say that everything is OK or normal if you don't feel that it is.
Inspiration for Life with Autism
This blog has a variety of articles about people living life with autism, and topics and ideas that can help in the journey. Guest bloggers are welcome. Inspired by Trevor, a young adult film critic, photographer and college graduate on the autism spectrum.