I often get messages from readers asking for advice on the topic of friends and family. ‘They just don’t get it’, they say. ‘They are always pressuring me to (insert parenting advice here) and they’re still in denial about the autism’.
First, can I say – we have all been there. It is awful, because the very people that are supposed to support you and be there for you in hard times actually make things worse. The first six months after diagnosis dealing with friends and family can be the hardest thing you do. And the strangers! Sigh. Dealing with unwanted advice from people that don’t ‘get it’ is hard. It is harder than researching therapies and harder than dealing with your own personal inner crisis.
I have spoken to women that have said that having an autistic child has cut them off completely from everyone that used to be around them. One said that it has made her a little autistic herself. What she meant was that she finds herself shying away from social situations and finds it hard to relate to anyone else. Everyone’s problems seem so petty. After all, how do people usually relate to one another? Through shared experience. Whether it is a death of a loved one, problems at work, or issues with babies not sleeping. These are experiences we all understand and we can offer real advice that may actually help.
Not so with autism. Odds are you don’t know anyone that has a child with autism, especially on the low functioning end if that is where your child is. You may look at the problems your friends have with their children and wish they were yours. But most people that don’t experience special needs parenting, don’t ‘get it’. So step one is always to find some special needs parents, online or in your therapy centre, and chat to them. Have at least one chat per week with someone that does ‘get it’.
Step two is to ignore and avoid. You can ignore and avoid the people that don’t get it if they aren’t important. And if they are…the rest of this post is for you.
Yes, they don’t really get it. But it can be important to try to understand them, these people that are important to you but don’t ‘get’ your child. I must confess here – I didn’t really get my son’s autism either, at the start. I am not sure that I really do even now.
Think back to what you knew about autism before you had your child. What you used to think about parents whose kids threw massive tantrums in grocery stores. You probably didn’t get it either. You learned, though. So can they.
Why Friends and Family are so Important
Your friends and extended family are the second most precious thing you have (after your children and spouse). Deep, open relationships are what gives us resilience and most of our happiness in life. Very few of us can have all of our needs met just from our spouse and our children, and it is unfair to ask that of them.
You need your friends and your family there. Even if they don’t get it. And they won’t, not for a few years. Not just for babysitting either (although that’s pretty great). You need them to be your child’s biggest cheerleaders. You need them to make you laugh and take you out of yourself. To listen to your problems, even if they don’t get them. Loneliness is one of the great challenges of special needs parenting.
Don’t Lock Yourself Away
There is a period of shock with any life-changing event. I had it after my mother passed away, after Michael was born (it’s not just after BAD things) and after his diagnosis. For six months, maybe a year, you go outside and are in shock about all the other people living their ordinary lives. Nothing has changed for them even though everything has changed for you. The trick is to not let that period extend for so long that you lose your connection to those other ordinary day-to-day lives. And try not to blame them for the fact that their lives are so different.
So you’ve decided to not lock yourself away. Once a month, once a week, whatever you can handle, you find someone that is receptive and you talk to them. What do you do when they continue to not get it? Honestly very few people do.
Well, at the start I separated the people in my life into groups.
Group One – The Ones That Try To Get It
Group One are people that don’t get it but are trying. They would occasionally say very hurtful things, mostly when they were trying to make me feel better. These people are worth their weight in gold so it’s worth patiently trying to help them learn. The best approach with them was to give them lots of good reading materials, answer any questions, and be really patient when they got it wrong. One of the MOST important things to do with them is to notice and acknowledge all the times they get it right. For every time that you say ‘no that’s not quite right’ there should be about five times you say ‘I like how you…’
Notice that they didn’t talk a lot and quickly, or that they didn’t ask questions. The time that they quietly waited for your child to want to be engaged, or the time that they saw your little one getting overwhelmed and stepped back.
Listen to their concerns, answer their questions. And remember that their life problems are every bit as important as yours, even if they seem small at this moment to you. You don’t want to be so busy telling them all your child’s little positive steps that you don’t notice their marriage is in trouble, or their parents are very ill.
Group Two: The Ones Too Scared To Try
Group Two are people that can’t get it and are too nervous to really try. These people did want to help or say something but were so scared that they would say/do the wrong thing that they would just sit there and watch what I did. With these people the correct approach was to encourage every interaction. I had to be very specific with instructions, which would give them more confidence. I would give them a particular toy that Michael was working on, a particular reward that he liked, and sit them down with Michael. Then I would say – every time he presses this button, let him watch a cartoon for a bit. And I would never go far, but stay nearby and watch them.
I would also always give lots of positive feedback. As I mentioned before, us autism parents are so hyper vigilant about things that people do that are BAD, that we just kind of take the GOOD things for granted. If you want a person to gain confidence, you have to tell them when they do the right thing much more often than when they do the wrong thing. Eventually as they gained in confidence I would bring in a number of toys.
Group Three: The Non-Believers
Group Three is people that can’t get it and don’t believe me. While they were of course very interested in Michael, they were clearly in denial about the autism. There were more of these people at the start when Michael was very young and it was less obvious. I stress that none of ‘these people’ were being cruel intentionally. After all, in some ways my husband and myself WERE ‘these people’ for the first eighteen months of Michael’s life. And we got to see him all day every day! So the key to understanding the people in denial is to remind yourself that this was you, not so very long ago.
I never left them alone with Michael. This was because they tended to try and make him do things he just couldn’t do. Then he would just get upset. But I didn’t just shut them out of our lives either. I know a lot of parents do, but I really don’t think that’s the way. Well, if it was a random person in the playground I ignored them. But if it was a person that was an important part of Michael’s life, all I did was encouraged them to watch us interact. They didn’t have to do anything. Just watch Michael and I doing a therapy session together. Or watch me feeding him, any kind of interaction.
Eventually they would start to understand the importance of using one or two words, and what it looked like when he really ‘understood’ something. Then they would move up to the second or first group.
One important thing not to do with the people in this third group is to let their comments get to you. Looking back, I think a lot of the time I got mad it wasn’t about the person or the comment, it was about me. It was about how little patience I had left after dealing with Michael, and it was about how little he let me sleep. Many days I was looking for a reason to be angry with SOMEONE, and imagining funny looks when they weren’t there.
Group Four: The Ones That Don’t Care
Group Four was those that didn’t get it and weren’t interested. And I know a lot of parents remove these people from their lives immediately. But I will argue that there is a place for them too, as long as they fulfill some other role.
Even if you have neurotypical children you will always have friends that are just not interested in having kids, in being near kids, or in talking about them. They might still you forget about home/children/yourself. And we need that person that can do great impressions, makes you go to the movies to see something REALLY BAD involving Will Ferrell or has the same obsession with CUE you do (ahem). They keep you connected with the non-child world. Maybe you don’t need them now. Maybe in a few years though, you will really miss them. Just don’t ask them to babysit.
Group Five: The Ones That Think They Can ‘Fix Him’
Group Five are the ones that don’t get it but have really strong opinions, really think they DO get it, and think they can ‘fix’ their kids for you. They might blame the way you act with them, and secretly (or very openly) think if you spanked/talked to/took out your kids more they might not be autistic. Many of these people will be older and sometimes will have a particular cultural background.
I don’t have any such people in my life at the moment mostly because I avoid them like the plague. But I have spoken to other parents and read things, and I know they exist.
You may need to avoid these people. If you can’t (sometimes they may be parents or grandparents) you might just need to ignore as much as you can. Redirect their attention to your other kids, or chat to them about their own interests. Sometimes they are in denial because they may be on the spectrum themselves. This may happen A LOT among family members since autism is so genetic and is very linked to a family history of other conditions like anxiety and depression.
It can be hard to have any patience for a person from this group, which is why avoiding them is easier than constantly controlling your own reactions. Waiting until your children are older and these people are more used to the idea can help. If they are family members, finding support groups is also good. Often people believe things more if they hear them from friends or peers. Other grandparents may have a perspective that you don’t.
Try To Be Constructive in your Criticism
The important thing in all your interactions is not to say something to a friend or relative in the heat of the moment that you will regret for the rest of your life. If you feel something like this coming on, then make something up and remove yourself from the situation. Go to the bathroom. Get a glass of water. Breathe and count to ten while hiding in another room. You can tell people off, I am not saying to stop being an advocate for your child. Just don’t say it while angry. Odds are you will say something you don’t believe, in the heat of an argument, and may lose a relationship.
In my experience sometimes it is best to write anything negative in an email. At a time when you are completely calm. Try to make it as un-passive-aggressive as you can. Have constructive suggestions, instead of a list of things the person is doing wrong. Note everything they are doing right. Even if you have decided not to interact with them again, that is no reason to be aggressive or rude.
This is all easier said than done. You may wish to remove yourself from them for a few weeks. It is better to write the ‘email’ while on a sugar high or after a glass of wine. But it will make people much more receptive and you may have one more important relationship still present in your life. Life is all about your important relationships. Try to keep as many of the really deep and meaningful ones as you can.