Wednesday, April 27, 2016

5 Things Autism-Friendly Churches Should Avoid

I have been talking a lot about things that churches should do to become autism-friendly. I like the positive approach. At the same time, there are things that should be avoided as well. None of these are new, but they are worth reminding of.

  1. Never use the word "retarded," even in what you consider an innocent way. It is offensive to parents of special needs children. I cringe at this word more than any swear word I hear.
  2. Never bring up the vaccine-autism connection. The theory that vaccines cause autism is often in the media but you should never bring it up. There are strong feelings on both sides and very few people in the middle. If a family brings it up, just listen to their feelings.
  3. Never offer a miracle cure for autism that you have found on the internet. There are many scammers that love to take advantage of desperate autism parents. Most of the "cures" out there are fake at best and dangerous at worst. Plus, the parents probably have heard about it a hundred times before.
  4. Never assume that an autism family is too busy to be reached out to. Having a child with autism can be very isolating. It is not easy being left out of activities because everyone assumes you are too busy or tired to want to be involved.
  5. Never, never, never give an autism family the stink eye when a child makes noise in church (this goes beyond autism). Giving a dirty look to the child is not going to make them stop. And it is not like the parents are unaware of the noise that they need your angry face to make them aware. If you want to get rid of a family with autism, just roll out the stink eye.

There are other things to avoid but this is a good start.

Saturday, April 23, 2016

5 Things You Need to Know About Autism

People are more aware of autism in the sense that people know that it is out there and a lot of people have it. But there is still a lot of ignorance about what autism is and how to interact with people.

1. Autism is a spectrum. It is actually called Autism Spectrum Disorder. This means that everyone is different. You will find everyone from that quirky person who is devoted to their hobby to a person with severe cognitive and communication delays.

2. Adults also have autism. Most often I hear about children with autism, but not so often do we hear about adults. Those cute children grow into adults and they still need love and respect.

3. Just because a person with autism looks like they they are ignoring you, does not mean that they don't hear you. Some people with autism do not like to make eye contact. Others may hum while you are talking to them. But you cannot measure their level of comprehension by what you see on the outside.

4. Autism affects the whole family. It is not just the person with autism that needs care and support. The parents and the siblings are deeply affected by the autism as well.

5. People with autism have value. Our society tends to measure value by what we can do. Some people with autism cannot do some things that others can. Any ability or a lack of ability in some area does not change the value of a human being.

I hope that you will share these five simple things that can really make a difference.

Thursday, April 21, 2016

What the Church Needs to Know About Autism - Episode 4

In this episode of "What the Church Needs to Know About Autism," I encourage churches to support families through the grief of a diagnosis. While autism is not the end of the world, there is a real grief as there is with any loss.

On Being an Autism Dad

I'm thankful to have Graham Ware share his story about being a relatively autism dad. Graham is the pastor of Centre Street Baptist Church and is also an army chaplain with Canadian Armed Forces reserves.

In January of this year, my 4 year old daughter Karyss was diagnosed as on the Autism Spectrum. Recently Stephen asked me if I'd be willing to offer a reflection on being a new "autism dad". I agreed, but I have struggled with what it means to be an autism dad because Autism Spectrum Disorder is just that; a spectrum. My experience with Karyss' autism can hardly be considered standard. Being a parent of a child on the spectrum can vary incredibly. It can be said if you've met one preson on the spectrum, you've met one person on the spectrum. So while Karyss is on the Autism Spectrum, it's hard to consider myself an "autism dad". I'm Karyss' dad. That I can speak to.

So what's it like being Karyss' dad? 

It's great. It's exhausting. It's stressful. It's funny. It's overwhelming. Basically, it's parenthood. Each person on the Autism Spectrum presents in a unique way. There are of course common things which show up to varying degrees. Specifically in Karyss' case, she is able to speak, though her words aren't always clear. She can describe things, and express her needs and wants. But she has significant trouble with social language, so having a conversation is difficult. She often "parrots" (repeats sentences she's heard which may or may not have anything to do with the situation). She struggles to engage in social situations, and often wanders away and prefers to play by herself. She has repetitive behaviours, and quirks which help her cope with stress and over-stimulation; she frequently uses objects to drum on tables, stairs, railings, etc, or does headstands on the couch, or twirls a piece of clothing, or chews, or moans. These may produce some awkward social situations, as these behaviours become more frequent and more intense when she's in public and having elevated amounts of sensory data to process. This makes it difficult to be out in public for extended periods of time, and when we do, it creates more stress and anxiety for us as parents. This is of course something all families encounter to a certain extent. Children have tantrums in the grocery store. Children miss social cues. For Karyss this happens more often, and for different reasons than other children. We don't always know how Karyss will manage in a given situation. She recently got invited to classmate's birthday party. We had no idea whether she'd be able to handle the noise and chaos of the situation (but she did very well). Will she melt down in church this week? Can she make it through a day of school without throwing something? If we go to the park, will she try to take off on us? If we go out, will she co-operate with a babysitter? Can we take them to this event or that place? 

The bigger issue for our family is sleep. One of the ways Karyss' autism presents is in her inability to stay asleep through the night. Because autism often results in sensory processing differences, some children, like Karyss, when awoken, cannot simply roll over and go back to sleep. Their sensory processing immediately kicks in, and so Karyss is fully awake, and ready to go. Even if it's 1am. And it typically takes a few hours to get her to resettle. This happens almost every single night. Karyss is 4 now. My wife and I haven't had a solid 8 hour sleep in over four years.

Autism is our reality. Is it a struggle? Yes, of course. All parenting is. Karyss requires extra attention and patience. We have to decline invitations to events. We can't go certain places together as a family, because Karyss can't handle to noise, crowds, stimulation; a simple trip to a restaurant can be quite the ordeal. 

But Karyss is still an absolute joy. I know all parents are supposed to say that, and I assume they all mean it, and so do I. You've never really understood the greatness of a hug until you've had a Karyss hug. Karyss makes us laugh more than she makes us crazy. I still thank God for her. Her name was inspired by 1 Cor. 1:15 "in order that you might be doubly blessed" (she's our second daughter). The Greek word charis (which we modified the spelling of) means grace or blessing. I stand by that name choice. She is a blessing. We've had to make some adjustments, and rearrange our lives- more appointments with therapists and specialists, my wife and I taking turns staying up with Karyss, planning our social lives around her needs, etc. But in terms of coming to grips with the diagnosis, I didn't have a huge struggle with it. Perhaps that's because it was confirmation of something we'd been expecting, so there wasn't a shock. It was almost a relief. With a dianosis comes access to resources, training for us as parents, assistance for Karyss, and an ability to advocate clearly for her. We can get behind her now, and help her flourish, as she works out the image of God in her own unique way.

Saturday, April 16, 2016

Autism Awareness is Not Enough

Autism Awareness
When I think about autism awareness, two things come to mind. One is that I am pleased that autism awareness has increased significantly. In fact there are times when I feel guilty that there is so much emphasis on autism and not enough on other things such as Down Syndrome. Of course the answer is to raise awareness in every area. As I talk to people in churches and other contexts, there are more people who have some idea about autism. There is plenty of work yet to do, but I'm thankful that things are getting better.

Having said that, I come at this not just as an observer but as an autism parent. In my discussions with other parents I have discovered a frustration with just spreading awareness. Awareness is nice but when will people move beyond?

When will people with autism be accepted and respected? When will people with autism be included? When will communities (including churches) see the real needs of families who are dealing with autism?

Reality is that many families who are dealing with autism are in crisis situations. I personally went an entire year with an average three hours of sleep per night. We have had our home destroyed and our other children bloodied. We have had to watch our children with autism completely overcome with frustration because they could not communicate their needs or feelings.

So please be aware. But also find a family to invest in. Provide respite for the family. Take the non-autistic siblings out for a fun time. Go and be present with the family and show love to every member. Even the smallest things can make a difference.

Friday, April 15, 2016

Audio Resources on Autism

One of the best ways to become more aware about autism to learn from good sources. La Trobe University in Australia has a tremendous amount of audio resources on almost every subject. I'm currently listening to my second course on Classics from La Trobe.

One of the areas that they teach on is autism. Here are two audio courses you can listen to for free:

Take advantage of these resources and pass them on to others.

Wednesday, April 13, 2016

10 Commandments for Being an Autism-Friendly Church

I am encouraged by the number of pastors and churches that have talked to me about being autism-friendly. How can a church become more welcoming to families that have autism? Here are the ten commandments. Forgive the lack of King James language.

1. See people with autism not as a goal to be achieved or a mission to be accomplished but as people to be loved, respected and accepted.
2. Learn about autism by reading books and websites, as well as talking with families with autism.
3. See autism ministry not just about the person with autism, but ministry to the entire family , including parents and siblings.
4. Stop seeing a worship service as being the perfect performance and embrace the sights and sounds that go with autism.
5. Do not judge a person with autism by one other person with autism that you have met. If you have met one person with autism, you have met one person with autism.
6. Do not ask a person with autism what their savant ability is. While some people with autism are savants, the majority are not. If they have an ability they want to share, they will tell you.
7. Do not share the secret cure for autism that you read about on the internet. There are plenty of scams out there and families know more about these things than you do.
8. Do not assume that a nonverbal person with autism has a low intelligence or that they can't understand what you are saying. They may be more intelligent than you and likely understand every word you are saying.
9. Discuss with families any concerns about safety, whether the person with autism is likely to run off or how they might react to others during a meltdown.
10. Pray for the families with autism. While autism is not the end of the world, it is difficult and exhausting. Just be prepared in case God decides to use you as the answer to prayer.

I will include a pdf version of these ten commandments here for you to give to the leadership in your church.

Wednesday, April 6, 2016

Dillan's Voice: Giving Voice to the Nonverbal

While I understand that the purpose of this video is to sell iPads, it is a moving video that gives valuable insight into what autism is life for some people. It is definitely worth watching.

Tuesday, April 5, 2016

The Guilt of Relief

For some families, it is possible to care for their children with autism at home with just some additional support. In other cases, the behaviours that go along with autism make such a situation impossible and there is a need to send the child to a group home.

The second scenario is our story. Twice.

Both our daughter and son ended up going into a group home, although not at the same time. Thankfully, they are now together in the same group home.

My purpose for this post is to share some insight into just one aspect of this difficult situation. There is an immediate sense of guilt when the decision is made and the child leaves the home for the first time. But there is another type of guilt that comes some time later. The family eventually feels some relief with the child out of the home.

Life becomes less hectic. The house becomes less damaged. The nights become less sleepless.

Although all of this is good, it brings its own type of guilt. Is a parent a bad person for feeling the relief of the child not being there? Whatever the answer to that question, the guilt will be there.

If you desire to support a family with autism and they have a child (or two) who leave for a group home, be aware of this dynamic. They will need you love and lack of judgment.

Getting Emotions With Aspergers

An interview with John Elder Robison, a successful person with Asperger's and his quest to experience emotions. Take a look at his books:
Look Me in the Eyes: My Life With Asperger's (USA) (Canada)
Switched On: A Memoir of Brain Change and Emotional Awakening (USA) (Canada)

Saturday, April 2, 2016

My Canada Includes an Extra Chromosome

This is so hard to believe. I'm a proud Canadian but this is absolutely disgusting. Here is the article that Rick Mercer refers to in the video.

How is the Church Doing With Autism Awareness?

Autism Awareness
As I write this post, it is World Autism Awareness Day (April 2). Today at a church retreat, I had a conversation with another autism parent. We were discussing about how things were going with autism awareness.

It certainly is much better. More people are aware of autism than ever before. This makes sense when the numbers go up to 1 in 68 children being diagnosed with autism. Major news networks regularly report on autism. People know that there is such a thing as autism.

Of course awareness in the general population does translate into awareness within the church. Christians now that autism exists and that it is a challenge for many families.

But is this enough?

I would suggest that churches have not done near enough. They may be autism aware, but are they autism friendly? How do churches respond when families with autism begin to attend? How do people react when a child or adult with autism gives a squawk during a worship service? Do churches understand that there is major need for ministry, not just with the person with autism, but with the parents and siblings as well?

I am thankful that I pastor a church that is autism friendly. They are not autism friendly because I'm the pastor. They got it long before they ever heard of me.

I have seen some encouraging signs in other churches. In the past number of years I have received an increasing number of messages by pastors looking for help in become more autism friendly. I love that leaders are being proactive and intentional in ministering to families with autism.

Of course there is always room for more. So today, work on the autism awareness. But then go on to build a culture of autism friendliness.

One resource I have put together is a bulletin insert on autism awareness for churches to use. You can find it on my Free Stuff page of my website.