Sunday, July 31, 2016

Autism Can Include Good News

Good News
On my main website, I post a weekly Good News post. I started this a number of years ago during a dark time in my life. It was a way of looking past all the difficulties and finding something that I could be thankful for. It began as a daily discipline and eventually moved to a weekly post.

Unfortunately, my main website is currently down and so I can't post a Good News post there today. But I can do it here.

First, I would like to encourage other autism families to do this. It is good to find the good news in all of the other things that happen.

My autism-related Good News is that our children are home for a visit. They live in a group home and come for overnight visits twice a month. I'm thankful that they are in a great group home where they are cared for. I'm thankful that Logan and Abby can be in a group home together, as this has made a huge positive impact on them. I'm thankful that we get to see them regularly. I'm thankful that we can enjoy them and have a fantastic relationship with them.

There are many things about autism I don't like. But I still can find plenty about our situation that I can be thankful for. This is Good News.

Logan Bedard

This is What Autism Looks Like

They say a picture is worth a thousand words. So here are a thousand words about autism...

Stephen Bedard

Friday, July 29, 2016

6 Things You Need to Know About Autism

While many more people are aware about autism, there are still many misconceptions. Here are six things that you need to know about autism.

  1. Autism is a spectrum. The full name is Autism Spectrum Disorder. This means that people with autism can be anywhere from awkwardly brilliant to intellectually disabled and all points in between. 
  2. Asperger's Syndrome, which is basically autism without the language delays, is no longer a diagnosis. It would now be considered high functioning autism.
  3. Nonverbal does not mean that a person with autism has no words or is unable to use words. It means they do not use verbal communication as their primary means.
  4. People with autism do have empathy. They just may express it in different ways.
  5. Just because a person with autism is not looking at you, does not mean they do not hear you.
  6. Although we do not fully understand the cause for autism, there is a very strong genetic factor.

Thursday, July 28, 2016

Should Autism Be Cured?

Is autism something that should be cured?

That depends on who you ask. I'm sure you can find parents of children who have severe autism who are praying for a cure for autism. But you will also find people with autism who find the very question to be offensive.

I'm in an interesting position as I have a foot in both worlds. Two of my children are severely affected by autism and are living in a group home. We have had many "I hate autism" days in our family. At the same time, I'm on the spectrum and I believe this has helped me to be the person I am and I like the way I am. I wouldn't want to be "cured."

I think there needs to be sensitivity on both sides. We need to respect the pain that families are going through with severe autism. For some, it is ripping their family apart. At the same time, we need to respect the fact that many have embraced their autism as a valuable part of who they are.

We need to acknowledge that some behaviours that can go with autism are dangerous. Our son has almost died because his autism makes him run away and leads him into dangerous situations. Our daughter has been very destructive because of her autism. These are real concerns.

There are no clear answers to this question. The key is to listen to the people involved and respect how they feel and not dismiss their experiences.

Tuesday, July 26, 2016

High Functioning, Low Functioning, Severe, Mild and Labels for Autism

Is it wrong to describe a person with autism as high or low functioning? What about being severe or mild on the spectrum?

I have encountered a number of people recently who find all such labels to be offensive, even describing it as "ableism."

What do we need to know about these labels? First, we should acknowledge that some are offended by the labels and so we should be careful how we use them and with who.

Personally, I'm not crazy about the high functioning and low functioning labels. Functioning in what way? What activities are measured to determine how well a person is functioning? I have used these labels but I intend to avoid them in the future.

But what about severe and mild? It is true that autism is a spectrum. That is why it is called the Autism Spectrum Disorder. It is also true that people are on different points along that spectrum. Two of my children are on the severe end. They are nonverbal and live in a group home. Their autism affects them in some pretty significant ways.

I am also on the spectrum and am considered mild. While I definitely have autism (what would have once been called Asperger's), many people do not notice my autism and perhaps even reject my diagnosis.

As a person with autism, I'm fine with the labels of severe and mild. I find them helpful in describing contexts. They are not meant as restrictions. My son is better at some things than me and that will continue as he grows older.

Ultimately, it is our job to be sensitive to the needs and feelings of the people around us. At the same time, we shouldn't be so politically correct that we no longer can describe anything.

Monday, July 25, 2016

Tuesday, July 19, 2016

Autism and Routine

One of the things that gave us a hint that something was going on with our children was how they reacted when I would pick up the mail. Where we were living at the time, mail was not delivered to the door but rather to a community mailbox. Most of the time I would take a certain route to pick up the mail, but sometimes I would change it up. When I would do this, our children (who were very young at the time), would start screaming. It was the strangest thing. At least we thought so, until we learned more about autism.

Our daughter is particularly stuck on routine. At one point, she had a meltdown while they were having a little musical concert at her group home. They later figured out why. The singer usually used a capo on his guitar for one particular song but this time did not. That was enough to set Abby off.

Even now, Abby is stuck on routine. It is normally me that drives Logan and Abby back to their group home after their visit. Sometimes Amanda likes to come. That is too much for Abby. She adores her mother but her routine is that only Dad drives them home. She can't handle any of the other kids in the car either.

Now this does not mean that routine is either good or bad. People with autism can get stuck on routine and sometimes a break in routine, as hard as that may be, is needed. However, a certain amount of routine is comforting for people with autism in a world where everything seems confusing. Sometimes minor changes in routine can be used to help the person learn.

What churches need to know is that routine is a major part of having autism. It is not something that should be tampered with lightly if you are trying to create an autism-friendly environment. No major changes should be made without consulting with the family. It may also be appropriate to ask the family if some recent changes have been made based on the behaviour you are seeing. We often knew when the group home had made some changes based on what we saw in Logan and Abby.

Understanding routines is an important part of being autism aware.

Sunday, July 17, 2016

Mild Autism Can Be More Challenging Than Severe Autism

We find that some people have more sympathy for us because our children are on the severe end of the spectrum. And if there is one thing you should know about autism, it is that it is a spectrum. People with autism can range from being intellectually impaired to being intellectually gifted. Because of the language challenges that often go along with autism, it is sometimes difficult to know where they are on the spectrum.

While there is some question about our son, it seems clear that our daughter is cognitively delayed. She is 13 years old but probably operates around a 4 year old level. However, when people offer their sympathy, I tell them not to bother. Abby is pretty happy the way she is. She either doesn't know or doesn't care that she is different. She is comfortable with who she is and she just enjoys life the way it is.

It is often more challenging for people with mild autism. While people with mild autism are more likely to get a post-secondary education, a job and start a family, they are also more aware that they are different. People with mild autism are more likely to suffer from mental health issues because they are faced with the daily reminder that they don't fit in (or that's how it may feel). This can wear on a person's mental health.

People with severe autism, may or may not be aware of the differences between themselves and those who are neurotypical.

This may not always be the case, but be aware that being more severe on the spectrum does not necessarily mean it is more difficult for the individual (even if it might be for the family).

Friday, July 15, 2016

The Other Side of Being an Autism Dad

Bedard Family
I won't deny that there are difficulties that go along with being the parents of children with autism. We have had quite a few crisis moments over the years. The fact that both our children now live in a group home tells you that it is not easy.

Sometimes we only hear the hard stories. But I want to say that it is not all bad. We have some awfully fun times. When our children come for a visit, my heart beats a little faster, not out of panic but out of joy. The hugs they give me when they arrive melt away my stress. Little things like going for Tim Horton's run for tea and donuts are enjoyable activity when my kids are with me. Just being around them fills me with joy and puts a smile on my face.

I do not want to discount the challenges that families with autism face. But we should not be pitied. It is not 24/7 of terrible times. To be honest, there are many times when Logan and Abby are less stressful than our neurotypical children. So be aware that I am good with being an autism dad and autism not able to rob our family of joy.

Monday, July 11, 2016

One of My Angriest Moments

If you ever get a chance to meet me, you will find that I'm one of the easiest going people you will meet. I can think of perhaps a half dozen times in my 47 years where I was really angry. Let me tell you about one of them.

This happened a number of years ago. Our son with autism had gone to an overnight Christian camp for a week and had an awesome time. We were eager to send him back to repeat this very positive experience. My wife began the conversation with the camp in January because our son needs one-on-one assistance. It was agreed by the camp and they seemed happy to have him return.

Summer eventually came around. My wife was on a mission trip in Europe but all I had to do was pack his things and drive him to the camp. Logan was very eager to return to camp and showed it in his own way. When we arrived at the camp, a number of the counsellors from the previous year recognized Logan and were excited to see him.

This is a picture of Logan on the way to the camp in this story

However, when I registered him, they told me that they had no record that an autistic child was going to be attending and no arrangements had been made for one-on-one support. I talked to the camp director and he assured me that they would try to make things work but could make no promises. While frustrated about the miscommunication, I really believed that things would work out.

I was wrong.

Only a few hours after I had dropped Logan off, I received a call from the camp director. He told me that they were unable to meet Logan's needs. He made sounds, so they had to keep him in the sound booth when they had their worship services. They were unable to engage Logan during the other activities. After a couple of hours of trying, they were done. He had already fallen asleep, so they would let me wait until the morning to pick him up, but he had to go.

Just thinking about this sends the blood to my head and my anger starts to rise. On the way to the camp the next morning, our three younger children kept asking me why we had to pick up Logan already and why he couldn't stay at camp.

Good question.

It broke my heart to pick up Logan and to explain to him that things had changed, that his week at camp was not going to happen and that he had to come home. Logan is nonverbal and people assume he is low functioning but we know that he is really near or above average in intelligence. It is just masked by his communication challenges. What does this do to a kid?

My anger raged within me as I drove him home. But two more things would happen that would raise my anger again.

One was that I received a call from the camp director. They discovered the communication they had with my wife in January where they had agreed to provide support for Logan. They offered for me to bring Logan back to the camp and they could try again. I refused. I couldn't put Logan through that again. You can't change things and then change them back again when it comes to a child with autism.

The other was something that I observed at home. Remember, those camp counsellors (who were all Bible college students) who couldn't engage Logan, no matter how hard they tried? Well at home, guess what happened? Our three younger children (the oldest of which is five years younger than Logan), decided they wanted to play with Logan. Logan does tend to get into his own world and he does this by focusing on his "stim object," which in his case was a small toy wrapped in a sock. So the kids grabbed his sock and ran, not in a mean way, but as a way to engage Logan.

As I sat there stewing about all the recent events, I watched as not only the three younger ones but Logan as well, ran around our living room giggling at the top of their lungs. These very young and untrained children in minutes had found a way to engage Logan even though trained young and older adults had already concluded it was impossible to engage him. I was happy and proud of my children but it increased my anger.

Am I fair to this Christian camp? I don't share the name of it because I believe they are doing some good work. Yes, they made some bad mistakes and yes it hurt both my son and myself. But I think the problem is in many ways typical of what happens in our churches and other organizations. This could have happened anywhere.

I share this story, not to hold on to bitterness, but as a challenge for all of us in how we treat those with disabilities and their families.

Saturday, July 9, 2016

5 Things That Parents Need When Their Child Receives an Autism Diagnosis

Even if parents have long been suspecting that their child might have autism, the moment that they receive an official diagnosis from the doctor is still traumatic. I can remember clearly the developmental pediatrician walking into the room with a box of tissues.

How can you support a family as they receive a diagnosis? Here are five things that parents need.

  1. No advice. Some well meaning friends want to offer advice about what autism is and how to raise their child. Do not do this. Keep your mouth shut.
  2. No explanation. Other well meaning friends want to explain why God allowed this to happen. This is even worse than the first one. Honestly, we don't know why God allows autism and any attempted explanation will always ring hollow.
  3. Expressions of love. This can be as simple as a hand on the shoulder or an offer to listen when they are ready. There is a need for balance of not being too pushy but also not isolating the family out of fear of offending them.
  4. Help with the other children. It is difficult to work through the grief of lost dreams and the other children can get lost in the process. Offer to take out the siblings to some fun event to give the family some time and emotional energy. See my post on siblings.
  5. Prayer. I do not mean a public laying on of hands. Simply keep the family in your prayers. You can tell them or keep it anonymous. It doesn't matter. See my post on how to pray for families with autism.

Thursday, July 7, 2016

What to Do When You See an Autistic Child Having a Meltdown

The chances are you have seen a family out somewhere and their child with autism was having a meltdown. You might think back and not find that memory. It is possible that you have seen this but did not know it at the time. You may simply have thought it was a "normal" family with a misbehaved child having a temper tantrum and the parents not strong enough to deal with it.

This is one of the challenges of autism, it is often an invisible disorder. If a child with Down Syndrome was having trouble in a store, people might have more grace because there are physical features that point to the syndrome. You can't always tell that a child has autism just by looking at them.

My first piece of advice is to not just assume that the situation is about bad parents and bad children. It might not be autism. It could be fetal alcohol syndrome, mental illness or any number of other challenges that just as much need grace.

I hear from too many parents of children with autism that they receive nasty looks and even nasty comments when their child is having a meltdown. We have been there. I will tell you it is hard enough to deal with the child, bad attitudes by ignorant adults does not help.

Do not offer advice. You do not know the child like the parents do. You are not going to come up with a clever idea that will make a difference.

Do not just stand there and watch. You may feel comfortable slowing down on the highway to see the aftermath of a car accident, but don't rubberneck an autistic meltdown. The child is not doing this for your entertainment.

So what can you do? It is acceptable to calmly ask the parent if there is anything you can do to help. They may be willing to let you carry their bags or watch the other siblings while they take care of the child with autism. Or they might not need or want your help. But the offer is good. If they refuse your offer, walk away and say a silent little prayer for them. That is all you can do.

Sunday, July 3, 2016

How to Pray for Families With Autism

I was speaking with one of our deacons this morning about the importance of prayer. We were saying that even if a person is not able to volunteer for a ministry, they can always pray. Prayer is one of the most important things that we do as a church.

So how does prayer fit with ministry to families with autism?

There are no lack of things to pray for when it comes to autism. Here are just a few:

  • Safety for the child with autism.
  • Strong marriage for the parents.
  • Emotional and spiritual strength.
  • Access to therapy and treatments.
  • An easier time of transitions.
  • Protection from bullies and increased respect and acceptance.
  • Financial aid for all the things that go along with autism.
  • New breakthroughs in development.

I think any family would be happy with these prayers. But I didn't list healing of autism in this list. Why is that?

For one thing, such prayers have been used as a weapon (even unintentionally) against families with autism. We have had people question our faith as to why our children still have autism. After all, we just need to ask in Jesus' name and it is done.

I do believe that God does heal but I do not believe that God guarantees healing for every Christian. The lack of healing does not reflect a lack of faith. It is hard enough to deal with autism, being accused of being faithless only makes things worse. I would suggest that it takes more faith to raise a child with autism than it takes to be healed.

But do we want autism to be healed anyway?

Autism is not a disease. It is not something like cancer that is only bad. As someone who is on the autism spectrum, I would not want to be healed. Even if there was a pill I could take that would remove all autistic characteristics from me, I wouldn't take it. I like who I am.

But what about my children who are on the severe end of the spectrum? Again, it is not the autism that is the problem. It is the things that go along with it that are challenging. So I would be very happy if they were miraculously able to communicate effectively with others. I would love it if our son had greater safety skills. I would love it if our daughter improved in her ability to learn. But none of that requires the complete absence of autism.

So how are you going to pray?

I encourage you to pray for families with autism. Ask them how they would like you to pray. But don't make things worse with your prayers and for the love of God (and I mean that literally) do not accuse families with autism of lacking faith!

Saturday, July 2, 2016

Autistic Children Grow Up

There is an increasing amount of awareness and resources about ministering to children with autism. Of this, I'm grateful. In fact I hope that this blog and my book are contributing to this.

In many cases, it is not difficult for churches to have a heart for children with autism. They can be pretty cute and adorable. Everyone who meets our children fall in love with them immediately. They really know how to grab hearts.

But our son is fifteen and in three years he will be an adult (that makes me feel old!). It sometimes feels like people forget that all these autistic children will grow up into autistic adults. Adults with autism, while still amazing, are usually not as cute.

There may be some implicit assumptions that the church has a responsibility to minister to the children but later these people can be safely shifted to the periphery of church life or disappear all together. I'm not trying to condemn the church here. I think the media is partially to blame with massive coverage on children with autism and very little on adults.

If a church wants to be autism-friendly, definitely prepare to minister to children and their families. But as you do, remember that these children will become adults. What role will they play in the church then?