My day job is supporting autistic pupils in schools and I love it. Listening to and working with these children teaches me so much. For ten years and with hundreds of pupils, I have developed a bank of strategies and ways of working that really work, and the understanding that at the centre of it all is a child who can communicate their likes, strengths, dislikes and needs … if you know how to listen.
Helping people with autism feel fully part of our church family and ministries (as receivers and givers using their gifts) can be approached in the same way. I wrote about “being an advocate in your church” and “15 ways to include people with additional needs”. At the heart of it all are PEOPLE we can listen to, share the gospel with and disciple. My blog this week is about sharing two excellent blog posts from others. First; Ann Memmott is an autistic woman who has a great gift of communication…she can explain what being autistic is like and how she finds the responses she gets from church people. What I like about Ann is that she doesn’t just explain, but she also suggests ways to overcome the barriers or issues, and I have learned a lot from her, just from listening.
Here is her post titled “Othering” from 11th July 2015
Some churches are fabulous. Their leaders are enthusiastic about learning. They enable their teams to get good training. They fundraise and allocate budgets to ensure that everyone can get to a service and feel valued. We know that such churches see their congregations…and finances…increase year after year. I am fortunate to have found several like this. But some others…well…I want to talk about feeling valued. What it is. What it is not. And about the ‘othering’ of people like me. Born autistic. Autism is a sensory processing and social communication disability, nothing to do with ‘bad behaviour’.
So often, disabled people or those who live with differences are tolerated.
‘Tolerate’ is what you do when you let someone sit next to you… whilst you feel uncomfortable and hope they sit somewhere else….but you smile at them in a false way. The thinking behind this is, “I am such a good Christian for allowing you near me. After all, someone like you being in my church spoils my experience of God. You should be thankful to be allowed here”. Had that happen a few times.
Now, the strange thing is that if it was done to them, other folk would immediately see that as intolerance. As prejudice. As falseness. As fear or hate. But it’s something that folk like me are often expected to be grateful for. I think not.
Sometimes disabled folk and others who live with differences are the subject of ‘awareness raising’. This means that we get to stand up in front of everyone and explain all the things we cannot do. All the things that make us feel really small and really bad about ourselves. And then, people are ‘inspired’ by us. “You brave person, coming to church!” “Wow, people like you can talk!” “So do you live in a residential home? Is that your carer with you?” I’ve had it all over the years. We are not friends. We are not colleagues. We are not equal. We are exhibits.
Now, the strange thing is that if this was done to them, other folk would feel really uncomfortable. But it’s something that folk like me are expected to be grateful for. After all, we’re talking about autism now, aren’t we. Yes, yes we are. In a way that demeans and uses me, and has no regard for the after-effects. Often I’m expected to do this for free. As if it is a special treat for me to be allowed to talk to church people about embarrassing things and then go home feeling bad. That’s not brilliant.
Yes, people like me offer training to the outside world. Training where we knowingly do stand up in front of many others and explain our ‘deficits’. Our difficulties. Training where we are an example to be assessed, a thing to be stared at. And after each session, we go home to our families and friends and partners and children…and try to restore our sense of self-worth. Important stuff, awareness-raising. But it’s nothing to do with valuing us.
What does valuing us look like? What does it feel like? What does it sound like?
It feels like we are seen as people, as colleagues, as friends. It feels like people want us to sit next to them. It feels like we’re offered the same chances as others to show our strengths. It feels like we are enabled to feel safe and supported, of course – but in consensual ways that ask us. In quiet, invisible, respectful ways. Training like that happens in many places, and it’s always a joy to work with such groups.
It doesn’t look at us as a cost burden. As a time-waste. As a ‘danger’ (frankly we are no more likely to be dangerous than you are). It doesn’t think that Church happens ‘elsewhere’ for us. There are no churches for autistic people. None. It’s like a thing where Jesus got his team to hand round food to the 5000 and left all the autistic ones hungry and thirsty. Do you think that’s what happened? Me neither.
We are God’s loved children too. Valuing us doesn’t allocate the budget and team and support to everyone but us… and then claim no money, no spare time. It doesn’t involve ignoring bullying of us, or blaming us for the bullying. It doesn’t involve laughing at us or using us as some sort of freak show. Or encouraging others not to help us. Or encouraging others not to talk to us, by pretending we are a nuisance. We’re not exhibits or dangers. Truly we are not.
We are your friends. We love Jesus and are Christians who want to share our love and care with others, just like you do. We have families, just like you do. We have passionate interests, just like you do. The church should not get to pretend that we are ‘other’. Not in front of God we’re not.
It’s our church too. It belongs to God, and God says yes. That’s a reality that every church already has to come to terms with. Plenty of us are willing to help. But know the cost, please. And value the time and exhaustion and despair that it causes, especially when so often the response is ‘go away’, a budget-withholding, silence-enduring, “We don’t want your sort here”.
You are loved. We are not your enemy. Learn about our gifts to the church and to God. Value us for who we are, God’s children, made in God’s image.
Second, I came across this blog in my travels around the net and loved it’s positive suggestions for things to say to autism parents:
But now I realize that it wasn’t fair to tell everyone what NOT to say to a parent of a child with autism, if I don’t give some advice on what TO say.
Just like every child is affected differently by an autism diagnosis, each parent is also affected differently. A comment that I believe is kind and encouraging, another parent may see as rude and condescending. Needless to say, I can’t give you an exhaustive list since every situation is different, however, I have come up with a few things people have said to me over the years that clearly left a mark and not a scar. So, this is a list of things TO say to a parent loving a child with autism that made me smile and want to hug them rather than hit them or scratch their eyes out.
The one thing to remember, regardless of the child or the parent, is to always be accepting, be aware and be kind.
1. “Wow! I can’t believe how far he has come!”
Even if the distance from where he was to where he is seems miniscule to you, chances are it is a huge, expansive distance to my son and me. Commenting on progress is a beautiful thing to say, but only if you really see progress or change. We mothers are like dogs; we can smell your fear in an off-handed, don’t-know-what-else-to-say remark. So if you do believe it, then say it. And be prepared to be hugged.
2. “He is so good at… [insert anything here].”
Whether it’s a perfect Jim Carrey imitation, how long he can sit watching the same episode of “Thomas the Tank Engine” and recite every word perfectly, or his ability to memorize all the details of every earthquake in California’s history, point it out. Point out the positives. See the positives. We see it. We know it. We love when you do, too.
3. “My friend’s, sister’s, cousin’s, great aunt twice removed’s son has autism and he is in college now.”
Yeah, we know that your friend’s, sister’s, cousin’s, great aunt twice removed’s son is not our child, and we know that autism is a spectrum of strengths and struggles, but, hearing success, hearing good news and having you share that in a kind, accepting and compassionate way, makes us love you, even if we don’t know you. I hope you like hugging strangers, because this may get you an even bigger hug than #1.
4. “Is there anything I can do to help?”
Asking this question in the middle of aisle six in the busy, loud grocery store where our child is currently having a huge sensory meltdown as we try to calm him down and discreetly scooch the glass shards from the spaghetti jar that just missed your head under our cart, rather than staring at what you believe may be an “undisciplined child” having a temper tantrum, may possibly make you the hero in a blog story that goes viral on social media three hours after you get home from the grocery store.
We know people are staring. We know people are judging. We know people don’t get it. That’s why those eight simple words from just one person are beautiful. Oh, and sorry about the spaghetti sauce on your new shoes.
5. “He feels so much, doesn’t he?”
This is a kind, compassionate and understanding way to say that when you see our child crying easily, melting down regularly, and being terribly inflexible, you are letting us know that you recognize that there may be more than meets the eye and that our child is not bad, and neither are we.
6. “He is fascinating.”
Not weird, not odd, not quirky. The way his mind works is fascinating and often has me in awe and wonder. I love knowing that you see his mind as extraordinary and not as something that is broken and needs to be “fixed.”
7. “He really loves you.”
Yes he does. There is such a misconception that children with autism don’t feel love, that their emotions are too bogged down by autism to “feel,” but, believe me, they feel love, they know love, they give love. And on days when it’s hard, on days where we have lost our patience, raised our voice and dried countless tears, we don’t feel very loveable, so it’s great when others see and feel that love, too. We know that our child loves us like no other and although that love may look “different,” it is never to be trivialized or minimized.
O.M.G. If you only know how many times a day I have wondered the VERY same thing. “If only I could get inside his head,” “If I only knew what he was feeling,” “If only he would let me in” has crossed every parent’s mind countless times. Knowing that you take the time to wonder, too, well, you have just gone up higher in rank on the Favorites list on my iPhone.8. “I wonder what he is thinking?”
9. “What is autism and why do they call it a spectrum?”
Yes, maybe we are tired of talking about The A Word, maybe we want people to see past autism and just see our child, but, we will never turn down an opportunity to educate someone about our child and debunk the “He doesn’t act like ‘Rain Man’” myth. So please, ask away.
10. “He has taught me so much!”
These kids see the world differently and if you take the time to get to know them, really get to know them, you will open your mind and your heart to their world and you will be better for it.
11. “I brought wine.”
Even though you might not fully understand what loving a child with autism is like, the fact that you are here, on our doorstep, holding a bottle of wine and trying to understand, well, there are no words to express our gratitude. We love that you feel like we are in this together, so grab two glasses while I get the bottle opener.
12. “I have Velveeta Shells and Cheese (or whatever the one and only type of food is that child will eat).”
You win. Game over.
When trying to decide what you should say, keep in mind that these children and adults with autism may have severe language deficits and they may not be able to say a word, but that does not mean they aren’t communicating with you. Take their lead. Maybe no words are necessary. Maybe you don’t have to SAY anything. Maybe it’s just a kind smile, a door held, making eye contact with us or a kind “hello” to our child.
However, if we initiate the conversation, if we say the words, “My son has autism,” just give us a knowing look, a kind smile and ask, “How is he doing?” We may say “fine” or we may break into a 10-minute long discussion about how far he has come and how far we know he will go. Whichever it is, trust me when I say, we will always remember that you asked.