At the same seminar, I saw Sean Barron speaking about the unwritten rules of social relationships. He was also an amazing public speaker. Here’s what I learned from him:
Unwritten Rule #1:Rules are not absolute. They are situation-based and people-based. People should handle situations properly.
Unwritten Rule #2:Not everything is equally important in the grand scheme of things. Many people with autism have a hard time having a healthy perspective on things. Certain things have to be prioritized.
Unwritten Rule #3:Everyone in the world makes mistakes. They don’t have to ruin your day. Don’t expect to be perfect. People with autism have a hard time accepting mistakes, but they have to learn from them. They need to let things go and move on. Life is not perfect. They need to be objective, not blow things out of proportion, or stress over unimportant matters.
Unwritten Rule #4:Honesty is different from diplomacy. Some individuals with autism can be very blunt and direct. They need to know their boundaries when it comes to honesty.
Unwritten Rule #5:Being polite is appropriate in any situation.
Unwritten Rule #6:Not everyone who is nice to me is my friend. Some people want instant results. Some people may take advantage of individuals with autism or be a bad influence on them. People with autism have to learn body language.
Unwritten Rule #7:People act differently in public than they do in private.
Unwritten Rule #8:Know when you’re turning people off.
Unwritten Rule #9:“Fitting in” is often tied to looking and sounding like you fit in.
Unwritten Rule #10:People are responsible for their own behaviors.
Generally, being a parent or a relative is not always easy. Don’t be afraid to tell your children, nieces, or nephews the truth about yourself. Honesty is the best policy. Tell them about your autism when they are old enough to understand. Or if you’re a relative, let the parents of your nieces or nephews tell them about your disability. Educate them and tell them that there is no shame in having a family member with autism. Give them time to come around and accept it. They will love you no matter what.
Some people with autism would like to be parents. Despite the difficulties, autism doesn’t make them incapable. Most people with autism turn out to be good parents. Autism has nothing to do with the reproduction side. It doesn’t cause infertility.
Advice for Parents of Children Just Diagnosed with Autism:
There’s nothing to be ashamed of. It’s not your fault. It just happened. It’s okay that you’re frustrated and overwhelmed, but things will get better in time. Be patient. Don’t push the person with autism too hard. That person is still there for you no matter what. Don’t give up! Quitting is not an option. Don’t worry what other people think. Find some support from people who understand your situation. To heck with the bigots! Build a community of people you can get advice and support from.
You don’t always have to rely on just specialists and professionals, but on other parents of kids with autism, and adults on the autism spectrum as well. Jason Katims, the executive producer of NBC’s “Parenthood,” and the father of a son with autism, once said he thought that finding that community was the first thing any parent should do after their child is diagnosed. A network of new friends might recommend a therapist or a social skills group or a place for a haircut. More importantly, they’re on the same boat as you are. Whatever you’re going through or struggling with or celebrating, many of them have been there and they can relate. A little empathy can help a lot on a difficult day. People with autism want your unconditional love.
Here’s what other parents say: Sharon Fuentes, author of “The Don’t Freak Out Guide to Parenting Kids with Asperger’s,” blogs about her experience raising her son Jay, 13, at Mama’s Turn Now. Her advice: “Your son or daughter is still the same person they were before they got the diagnosis. I know this may not have been the path you would have chosen to have traveled down, but some of the best journeys in life are ones that happened when we unexpectedly took a left turn. Yes the road can get bumpy, but that is when you need to reach out to all those that have been there before you who do whatever they can to smooth the path for your child. Remember that you are not alone, trust your own instincts, breathe, laugh often, believe in yourself and more importantly believe in your child and never ever lose hope!”
Bernie DeLeo was a drama teacher at West Springfield High School in Fairfax and has a 20-year-old son, Charlie, with autism. The school staged a play DeLeo wrote, “Nerdicus (My Brother with Autism),” about his daughter’s experience growing up with a sibling with autism. His advice: “My biggest advice to parents is, first, don’t panic. Second, after the initial freak-out and panic (you will, even though I told you not to), educate yourselves and know your rights and options. Third and most important, don’t let people tell you what they think your child is capable of. They will immediately see the disability, and NOT your child’s capabilities! Every child will be different. At my son’s high school, they recommended that he not take languages or aim for the Advanced Diploma. ‘Special Ed children tend not to do well with languages,’ they said. We ignored that advice, he took 5 years of Spanish, and now he’s living away from home and majoring in languages at Marshall University.”
Shannon Des Roches Rosa was one of the editors of the Thinking Person’s Guide to Autism, a book and Web site devoted to providing information from autism parents, people with autism, and autism professionals. She also has a personal blog at Squidalicious, where she writes about her adventures parenting 13-year-old Leo, who has autism. Her advice: “I wish — more than anything — I’d tried harder to understand my son instead of trying to ‘fix’ him. He was the same sweet, capable boy both before and after his autism diagnosis; the only change was my awareness of his needs. And he needs me to love him, respect him and champion him. He needs me to make sure he has time to play. He needs me to fight for appropriate communication and learning resources. He needs me to get him support to navigate an autism-unfriendly world. Understanding instead of fighting Leo’s autism makes us both much happier people.”
Raising a Child with Autism: Educate yourself about autism. Love your child unconditionally. Ask someone who is already aware of autism for advice if you need any help. Teach your family about autism. Learn how to deal with their behaviors or seek professional help that fits your criteria. Use caution or be prepared for their meltdowns or certain situations. Plan time for breaks. Help them boost their confidence when they’re feeling down. If they find out they’re autistic, talk to them about it. Help them understand the meaning of their condition and understand how they feel about dealing with their disability. Parents, you and your children will still lead normal lives. Don’t concern yourself with what other people say or think. Some people are just ignorant. There is nothing to be ashamed of raising an autistic child. Tell your children there is nothing to be ashamed of for being different. They are still special no matter what.
Advice for Parents from Teen on Autism Spectrum: Tell your children that they have autism when the time is right, and when they’re old enough to understand. It doesn’t matter how they’ll react. Give them time to come around and accept it. Tell them that being different is nothing to be ashamed of and you love them unconditionally. Teach them self-respect and acceptance and how to deal with the world.
The “typically developing” siblings of children with autism are, in fact, the furthest thing from typical. Often, they are wiser and more mature than their age would suggest. And they have to be, given the myriad challenges they face: parental responsibility; a feeling of isolation from the rest of their family; confusion, fear, anger and embarrassment about their autistic sibling. And on top of all of it, guilt for having these feelings.
My advice: Don’t feel left out or jealous. It’s okay if you feel neglected, but resenting your family or autistic sibling does not help. It only makes the situation worse. And yelling at your autistic sibling out of anger does NOT help either. Find some common ground with your brother or sister and make a connection. Don’t push them too hard. If you feel neglected, talk to your parents and figure out how to work it out—getting the equal amount of love and attention as your autistic sibling. It’s not the end of the world. You’ll still be loved no matter what. Be patient and compassionate. Put yourselves in your parents’ shoes to understand them. Create special time. There is nothing to be ashamed or embarrassed about. Don’t worry about what other people think or say.
When you think your sibling’s an embarrassment, encourage honesty and laugh. Example: if you have friends who make fun of your sibling, defend your sibling and don’t make fun of them. Tell your friends what’s going on and teach them how to tolerate your sibling. If they don’t understand, they’re not your real friends. A lot of typical siblings are more outspoken. They’ll go up to people and say, ‘Yes, that’s my brother or sister. He has special needs. Do you have any questions?’
Sense of humor is key. Another example: At a bus stop, Olivia, a girl with autism, started jumping up and down and making weird noises-just being herself. When her brother, Joe’s friend started making fun of Olivia, Joe said, “Hey, don’t be a jerk! Don’t make fun of my sister! Everybody learns differently. You gotta respect that. Just let her be.” Stand up for your brother or sister when he/she is being bullied by other people. If you’re embarrassed in public, ignore their tantrums or quirks, find a way to calm them down, or ask for help from someone reliable and trustworthy.
If you feel like you’re the parents, let your siblings be the children. Don’t think of it as a babysitting job. Think of it as an opportunity to be responsible and bonding with your sibling. Ask family members for help when it comes to holiday social gatherings and other situations. And discuss future plans when you have doubts about adulthood. Find a safe haven in case your autistic sibling gets aggressive. Help your parents create an intervention plan. Parents, educate your non-autistic children about their sibling’s disorder.
Dr. Raun Melmed, co-founder and medical director of the Southwest Autism Research and Resource Center in Phoenix, suggests including non-autistic children in visits to the doctor or other autism professionals. A great way for kids is to meet other siblings of autistic children, which they can do at sibling workshops. Siblings will commonly have negative feelings, some might never connect or want to connect with their autistic siblings, but the good news is that typical siblings often turn out to be more compassionate and caring than average. Love your sibling unconditionally. Let them come to you. This advice for parents and siblings may also apply to relatives and guardians.
Tell the person with autism your name. Hang out with them. Bonding is a great way to get along with each other. People with autism encounter great difficulties in social interactions. This is a way of being for them. Most often you may need to be the one to make first contact and initiate any discussion. They show little interest in playing games, etc., so you may need to be the one who initiates these interactions. Hanging out with them all the time may make them feel like they are the most important person in the world. Ask them their dislikes. Some people with autism have louder hearing than we do. Help them out with anything including their problems. Compliment them. Find little things that they are good at and notice them. They will have more confidence with things that they do, and that will help them stand up for themselves in the future.
Don’t push them too hard at anything or they get stressed out. Give them time and space. Sometimes they like to be alone to think, so if they ask you to go away, do what they say, or if they seem upset, ask them if they are. Don’t take it personally if they don’t respond. They’re wrapped up in something else, not being ignorant. If they say no at joining a club or going to your house or whatever social opportunity it is, it doesn’t mean they’re rude. They just want to think about it whether they want to do it or not. Don’t encourage them to do bad things or force them to do things they don’t want to do. Don’t pressure them to give up on things they love.
If you don’t like some of their interests, ignore it. Maybe you’ll have something else in common with them. Find a way to put up with their quirks. Like any other friendship, stay loyal. You’ve got their backs no matter what. Love your friends unconditionally. Treat them like a regular person, a human being. Nothing to be ashamed of having an autistic friend. If they get bullied often, stand up for them. Even if the bully is your best friend. Getting your friends to be nice to your friend with autism will help him or her feel like they are not just a person but an important person. Always be there for them. It will make him/her feel appreciated! Everyone, remember this: You are not alone. Autism is a unique thing.