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5/26/2016 DISCLAIMER: This post was recently reposted on a blog this past week. I had forgotten about this post. I need to say a few things:
First, I am sorry. This post was written in the months after my son’s diagnosis. I did not know much about autism, but I thought I knew somethings.
Secondly, I have now gotten to know autistic youth and adults and would never say some of the things I said in this post, primarily about intelligence. I would now err to presume intelligence, always. My kiddo has surprised me in leaps and bounds and probably knows when I have been talking about him and I am embarrassed by my lack of judgment.
Thirdly, I am leaving the post here. Why? Because there are a few things in this that are helpful. It also helps document my journey as a parent and remind me that I am not perfect. Plus, it’s already been reposted, so I don’t want to delete it now or try to tidy it up. This is who I was. This is not who I am now.
Feel free to reach out to me.
I know I haven’t done a Tuesday Top ten in a while again, but this week, some things have been on my mind that need to get out. These are the Top Ten Things You Need To Understand About A Family with a Child with Autism. Note that we are not all the same: autism is a spectrum of disorders, ranging from mild to severe, with different symptoms and different approaches. So what I say may not apply to everyone you know who has a child with autism, but this has been my experience. And know also that we realize everyone is trying to be friendly and helpful, but sometimes words and actions aren’t as helpful as one might think.
1. Autism is a spectrum, as I stated above. Therefore, what you know about one child with autism may not be the same for another. One child may receive excellent care and services in their school, so you are eager to recommend it to another parent. But their needs may be completely different. When people hear that we have a child with autism, almost always they want to tell us about someone else they know whose child has autism, and put us in touch with them. Often they have “good” stories they want to share of kids who have outgrown their symptoms or have become independent adults. While those stories can be inspiring, it doesn’t mean that will happen to our child.
2. Not all “treatments” you hear in the news are affective, have been proven, or work for all children. Same with the stories you hear—no two children with autism are alike, so what works for one family may not work for another. Research is still forthcoming on a lot of alternative treatments, and while one family may swear by a new diet or new therapy, another may find it doesn’t work for their child or their child has different symptoms, or simply may feel it is not right for their child. Please respect their choices on treatments and therapies and understand that these are personal and private decisions.
3. Don’t say, “I’m sorry” when you hear someone has received a diagnosis of autism. While it is difficult, it also confirmed for us part of who AJ is. I can’t imagine AJ without his autism. He is a whole person, and autism is part of who he is. I realize it’s a natural reaction (I often say, “I’m sorry” for things when I am sympathizing with someone—I am trying to break this habit) but it’s not a helpful reaction.
4. Similarly, don’t say, “He’ll be fine.” I hear this one from friends and family often. While it is meant well, we really don’t know what AJ’s outlook will be. Sure, he will be fine, but that doesn’t mean he will turn out like a typical child. It doesn’t mean he will live independently, ever. It doesn’t mean he will graduate high school or hold a job or, at this point, even be toilet trained. We don’t know. There is so much unknown about autism, that when we share our concerns or worries, hearing “He’ll be fine” just dismisses our own feelings as irrelevant. Saying “he’ll be fine” may make you feel better, but not me.
5. Don’t assume higher intelligence. Because of the recent movie about Temple Grandin and some other stories of people with high-functioning autism or Asperger’s syndrome, many people assume children with autism have high intelligence or are “super smart.” This is not always the case and I have sadly seen parents explain to someone who made that assumption that no, their child also has some mental disabilities. While our son shows some signs of what may be high-functioning autism, right now they are just hopes that we have. He still does not communicate nor can we tell for sure that he will communicate in the future.
6. Listen. This is the best thing you can do. Listen when a parent receives the diagnosis for the first time. If they are asking for contacts with other parents, then offer your connections. If they want to cry, let them cry. If they want to share all their worries and fears, let them share their worries and fears. It’s so easy in our culture to want to make everything better and say it will all be ok, but the best thing to do is listen and be there for them.
7. Check in. Ask how they are doing, if there is anything they need. Often parents of children with autism are overwhelmed with the information and opinions, underwhelmed with the lack of research, and from my experience, at times just tired and in need of a break or an adult to talk to. Bonus: if you are comfortable, if you have gotten to know the family and the child well, you can offer to babysit. Know that this might mean administering medication or dealing with a child who won’t sleep, or like us, dealing with a 4-year-old who is the size of a 6-year-old who is not potty trained. But offering to babysit or give a parent a break for an hour or two is a wonderful, wonderful gift. Even if it is not accepted, know that the offer is much appreciated and is a very kind gesture.
8. Don’t ask about future children. This should be a no-brainer and should be seen as an inappropriate question to ask regardless. It is a personal question. It is harder for those of us with a child that has a difficult diagnosis, because we are still struggling to care for the child we have.
9. Don’t judge parenting styles. Ah, this is one that perhaps could be stretched beyond autism, but here it is: we have decided to parent AJ as seems best for our family. AJ doesn’t understand discipline in terms of actions/consequences. The good thing is that he rarely acts out or does anything on purpose—when he does, he’s simply being mischievous and when we have attempted to punish him he has smiled because he got the negative attention he wanted. Instead, we attempt to redirect his attention elsewhere. However, there are times when we want him to know that his behavior is inappropriate for the situation. Some have told us, “Oh, it’s ok,” when he does something such as take food off of their plates. This is not ok to us, and we want to help him learn what behavior is appropriate. At the same time, we don’t sweat it when his behavior is not disruptive, distracting or harmful to himself or others. If he’s simply being a bit louder than others or running around in circles, we may let him do it.
10. Love and Learn. Autism occurs in one out of 88 children, one out of every 54 boys (source: Autismspeaks.org). When AJ was first diagnosed in August of 2011, it was one out of every 110 children, one out of every 70 boys. The numbers are growing, due to a number of factors: more awareness and early diagnosis, as well as increased understanding of the spectrum of disorders. At the same time, diagnosis methods and categories are changing, and there has been some over-diagnosis of children who have later grown out of their symptoms, but these are few. Read up: Autism Speaks is a good organization to get a basic understanding. But the most important thing you can do is offer your love to our children with autism and to their family. Listen to their stories. Know that every child is unique and every family with autism is different. We prefer to say that “AJ has autism” rather than “AJ is autistic.” However, we know others who prefer to say their child is autistic (some of it is semantics, some of it is about identity—if/when AJ should be able to communicate and let us know what he prefers, we will go with his preference). But regardless of what label we use, what diagnosis is given—love is the greatest thing we can offer, the greatest thing we can do for our families with autism.
So those are my tips. Know that if you have read this and you are a friend or family member, this is not a personal note to you. There are no hard feelings. This is my hope to help share a greater understanding of what we are going through, what our feelings are, and how we can help others. This is a continuing journey for us, and we will gain new understandings and insights ourselves as we learn and grow with AJ. I hope you will, too.