I am not the only sibling who sees what autism is like and my family isn't the only one who goes through the daily life of having an autistic family member. It's not easy no matter how you look at the situation.
While browsing my Facebook news feed one day I saw a post that a page put up, reminding everyone about autism awareness month. While skimming through the comments something jumped out at me.
There was a sibling who was sharing their feelings about how hard it is and how she would just like some time now and again where she could get more attention, like how her birthday happens to fall in April. Because of sharing her feelings like this, someone else started attacking her with comments, calling this person "selfish" and "uncaring."
The one making the accusatory comments explained they are on the spectrum and said things like how "normal" people shouldn't be complaining and tried to make the point of "how do you think it feels to be thought of as an outcast?"
All of that is very understandable. However, what the person who did the attacking failed to realize, as do many people, is that it's hard as a sibling too.
People on the spectrum know what it feels like to be "left out" and "put on the sidelines" because they are "different." But at the same time siblings know what it's like to be "overshadowed" and possibly "left behind" because the family has to focus on the needs of the individual on the spectrum.
The family doesn't do it on purpose. It doesn't mean they love their other children any less. It simply means that one person needs more help than the rest do. It's hard as a sibling to deal with that knowing they won't always be first priority. Trust me I'm talking from experience.
It doesn't mean the sibling doesn't love their brother or sister on the spectrum less and it doesn't mean they wish that sibling would disappear. It's just hard to deal with.
Do I resent my brother for needing extra help or even for being on the spectrum? Absolutely not. In fact, as hard as any situation is with people on the spectrum, autism is what makes Sean as unique as he is. Sure there are things I wish he could get to do that he can't because of autism, but I wouldn't change who he is as a person.
When I saw these comments calling this sibling "selfish" I wasn't too happy. Other people agreed and they made their opinions known. They all understood where the attacker was coming from but said the person's approach was wrong, which it was. They missed the point that this sibling was only stating her feelings. Not once did she say she hated her autistic sibling. Not once did she wish anything bad on him. She simply said how hard it is.
Page 2 of 3 - That's where some of the issue lies as well. People don't realize that it's not only hard on the person who has autism, but it's hard on the parents and siblings as well. It's hard on EVERYONE involved.
I've said this a lot lately and I will always stand by this fact: Nobody will truly understand what it's like to have an autistic member except the immediate family.
Even given that fact, the immediate family doesn't even understand it completely. There are times where nobody has any clue with what to do next. Each day is different and you never know what you can expect.
People who are outside of the immediate family, even other relatives, try to think they know exactly what's going on, but the truth of the matter is they don't. They don't see it 24/7, 365 days of the year. They'll see some of it and might understand that part, but that is so small in comparison to what it's really like.
Nobody will ever be as close to the situation or as understanding as the immediate family. Others can care all they want, but it just will never be on the same level.
I get so annoyed and sometimes pretty angry when I see people (other family members included) act like they know what's wrong with Sean and how to "fix" it, when in reality they don't have the slightest clue. When it comes to disciplining or taking control of the situation, it is a COMPLETELY different world when there's a person on the spectrum (or any other kind of disability) involved.
Sometimes all it takes is the smallest trigger to set them off and it could make the situation so much worse. It isn't a matter of more discipline either.
I saw a post on Facebook yesterday that made light of that entirely. What perfect timing that was. It said, "Oh so you're saying all kids with Autism need is more discipline? So if you give a child enough time outs he'll just stop being autistic? And if I speak Latin to you loudly enough you'll become fluent."
Sure the comparison is odd, but the fact remains the same. Autism isn't just going to go away overnight. You don't just wake up one morning without it.
My advice to you is that you should never go into a situation thinking you know it all, especially under these types of circumstances. As a family member, friend or even a neighbor you should be supportive of these individuals no matter what and not sit there acting like the way they are raised is wrong or that you know the solution. There is nothing "wrong" with individuals with disabilities.
Page 3 of 3 - Even individuals who are verbal don't always know how to express when something is bothering them. That doesn't mean they are "bad people." There is so much more than meets the eye. I guess it's much easier to understand when you see the situation all the time, but we can only try.
Don't judge family members or friends in these situations. They are doing the best they can to help their son, daughter or even parent on the spectrum. Some even have several relatives trying to overcome this obstacle.
Keep in mind there is no easy solution and not one answer. Understand that it is hard on everyone involved, so don't go out of your way to make the situation worse because you "see things differently."
Waters is a staff writer for The Wayne Independent and can be reached at firstname.lastname@example.org