Meet Our Son

In the second episode of my autism podcast, I introduce you to our son. He has taught us much about autism and life in general. Here is a little about our story.
 

Introduction to the Autism Dad Podcast

Of all the roles I have, one of the most important is that of an autism dad. I have interviewed people about autism on my regular podcast but I have felt like there was a need to gather all my autism content into one podcast. The result is the autism dad podcast. You can listen to the first episode below, which outlines the goals for this podcast.
 

Disability and the Gospel - Review

One aspect of working through ideas about disabilities is to develop a theology of disability. The Bible has some important things to say about disabilities. But how do they fit together and what is the main message?

One of the best resources I have come across is Disability and the Gospel by Michael S. Beates. Beates comes at this topic not just as a theologian, but as a father of a daughter with a disability.

In the book, Beates works through both Old and New Testament teachings about disabilities. He also looks at ancient and modern thought on disabilities, both from a Christian and non-Christian perspective.

Beates provides a very helpful summary of where theology has interacted with disabilities. At times it has been less than helpful, but overall, there are good resources that help us to understand where disabilities fit in God's kingdom.

If you are wrestling with a theological understanding of disabilities, I highly recommend Disability and the Gospel.

The 21st Chromosone

Autism: Predicting Overload

Confessions of an Autism Mom

I am so thankful for my wife and the way she is able to put into words our experience as autism parents. Amanda recently wrote a post on her blog, describing exactly what I have been feeling lately.

Christmas time will always be a time of remembering for me. Our first child was due on New Years day but I had a miscarriage and it never came to be. I was quite pregnant with Logan by the time my due date for our first child came. We light a candle and whisper love to our Kennedy as each new year begins. I had hopes and dreams for this child I was carrying, this promise and gift from God. Promises and gifts come in all shapes and sizes, Logan is no different.

You can read the full post here. I encourage you to check some of her other posts. She is a much better blogger than I am.

Dear Future Mom

A heartwarming message from 15 people with Down syndrome to a future mom.

 

Siblings With Disabilities

One of the aspects of disabilities that people miss is that there are often siblings. Such siblings are very special people. I encourage you to watch this video that shares the thoughts of some siblings of children with disabilities.

 
Siblings from Kristen Huys on Vimeo.

On Being an Accessible Church

In the province that I live in, it is the law that all public buildings, including churches, are accessible to those with disabilities. We shouldn't need the law to make us accessible. What people sometimes forget, is that being accessible means more than just working with physical disabilities.

It is likely that if someone in a wheelchair wanted to attend your church, you would make sure that there was an elevator or a ramp. But what about those with developmental disabilities or mental illness, are you accessible for them?

One way to make your services accessible to those who experience anxiety is to provide audio or video versions of the messages on your church website. Obviously we want people to attend in in person. But there are times that anxiety levels are too high to sit in pews and be surrounded by people. By having sermons on the website, people can still benefit from the teaching.

What other ways can you make your church accessible for people of all needs?

He Came Down

If you are having trouble getting into the Christmas spirit, you need to watch this video. It is about a nativity play put on by children with Down Syndrome.

Bullying Also Happens in the Church

People with disabilities are too often the target for bullying. Those who have communication or cognitive challenges are particularly vulnerable as they may have difficulty reporting the bullying.

Ideally, the church would be a safe place away from bullying for people of all abilities. Unfortunately, we do not live in an ideal world. People feel insecure and insignificant and so they attempt to compensate by treating others badly. It shouldn't happen but it does.

Do you have people with disabilities in your church?

Be active and not reactive. Instead of waiting to respond to a bullying incident, begin the conversations now. Do teaching with your staff and volunteers. Have the discussion with your youth group and Sunday school. Work hard to make churches a safe place for all people.

What is Autism Spectrum Disorder?

Nothing is Happening Tomorrow

Have you ever had someone start to say something, in the sense of revealing information, and you would do anything to stop them? We have many times.

When our two children with autism lived with us, both had sleep issues but in different ways. Abby was just messed up when it came to sleep. It was not unusual for her to get up between 1 and 3 am.

Logan generally slept well, getting up around 7 am. Unless someone said something.

If in the evening, we or someone else, mentioned that something would happen the next day, there would be a problem.

"Logan, Grandma is coming for a visit tomorrow."

"Logan, tomorrow is a day off school."

"Logan, Abby's birthday is tomorrow."

If anything was going to happen the next day, Logan would get up extremely early. Sometimes midnight and sometimes he wouldn't sleep at all.

We came up with the policy that NOTHING was going to happen tomorrow, no matter what was really going to happen. It was easier to train ourselves than others. It is natural to share the excitement of what was coming. Sometimes the event was so minor, that it did not seem to be a big deal. But we had to cut off people and re-educate people about what was allowed to be said.

Anticipation was something too disruptive to Logan's sleep.

And that is a glimpse of autism.

What is Scripting?

What is an Autistic Meltdown?

Autism Spectrum Disorder Infographic

by J.L.

From Visually.

A Theology of Autism

This is a lecture by theologian John Swinton that was given at the Summer Institute on Theology and Disability in 2011.

 

The Church and People With Mild Autism

I think that there has been some improvement in the church's willingness to embrace and minister to people with autism and their families. But often the people with autism that the church has in mind are those on the severe end of the spectrum.

What about those with mild autism?

These are the people who have what was once called Asperger's Syndrome but is now just mild autism. You may not even know that they have autism. These are people that have intense interests that they want to talk about all the time. These are the people who struggle to know what is socially appropriate. You likely think of them as quirky rather than autistic.

There is a certain amount of compassion for those who are on the severe end of the autism spectrum. But those who are more mild do not necessarily benefit from this compassion. They may be easily left out and isolated.

Remember that autism does not always look the same. Have the same love for that teenager who always talks about airplanes as you do for the child who is nonverbal.

An Autistic Evening

One of the purposes of this blog is to increase awareness about autism. As much as I love to share the positive experiences, the reality is that there are some difficult times. I have no desire to use this as a platform for complaining, but I believe sharing the reality of autism will help people to understand what parents go through.

We just made a major change in how our visits with Logan and Abby go (they live in a group home 1.5 hours away). Previously, the group home brought them to our house Friday nights and I brought them back Saturday mornings.

Starting today, I went early in the morning to get them, with the plan that the group home would come and pick them up in the evening. That is two major changes for Logan and Abby. They are no longer staying overnight and I am now bringing them here instead of taking them back.

They actually did very well. Our visit was fine, with lots of laughter. Even when the van pulled up to get them, Logan and Abby got there stuff together and went out to the vehicle. Everything was going smoothly.

Then the van door got stuck.

Abby, a couple of minutes after a meltdown.

The worker tried to compensate by putting Logan in a different seat than normal. That was one too many changes for Abby (she was already stretched pretty bad). Abby got upset, which got Logan upset, which made Abby more upset and on it went. There was a lot of crying and shouting. They were both in meltdown mode and they were feeding off each other.

There was no getting them both in the van. The only thing we could do was for me to take Abby into the backyard and jump with her on the trampoline, while Amanda got Logan into the van. They then took off, while I got Abby into our car with the promise of a stop at Tim Horton's. Then off we went for my second round-trip today.

This is what autism is like. Changes in routine can easily lead to meltdowns. People with autism can feed off each other when upset.

Amanda and I were able to work as a team to deal with the situation. Not every parent is able to do this.

Again, none of this is meant as complaining. This is simply the life of autism parents. But of you want to support families such as ours, you need to know what life looks like.

How to Talk to a Person With Autism Who Seems to Ignore You

If you tried to talk to our son, you might find that he would avoid eye contact and probably would hum while you spoke. I suspect that our son is not unique in this. In fact, there is a young man in our church who is very similar. What should you do if you find yourself in such a situation? Here are some pointers.

• Don't force them to give you eye contact. Parents might do this on occasion, but there usually is a reason why they are avoiding eye contact. You might find that if you don't push the issue that they might give you more eye contact as they get to know you more.
• Don't raise your voice. Unless there are additional hearing deficits, yelling will make them less likely to listen to you.
• Just because they seem to be ignoring you, don't assume that they are not listening.
• Talk to the person with autism and not the person with them. Address them directly.
• If they don't answer a question, don't keep repeating it.
• Look at them directly and smile.
• Don't speak to them like they are a little child (unless they are a little child). Many people with autism who are nonverbal have normal or above normal intelligence. Do not judge their intellect by their communication difficulties.
• Don't give up, no matter how much they may seem to ignore you. Greet them with the same enthusiasm every time you see them. It really matters.

What is an Autism Service Dog?

Many people have heard of guide dogs for the blind, but what is an autism service dog? The principle is the same, in that the dog wears a jacket that allows the person to go into public places.

One of the main purposes of an autism service dog is safety. Many children with autism are runners and safety is a big issue. The child with autism is tethered to the dog and so can only go as far as the tether will let them.

Logan and Halo

We had a service dog for our son and it was incredible the freedom that he gave us. I could go for walks with Logan and go to the grocery store with him, and not fear that he was going to take off.

For many children with autism, the dog also provides a comfort factor. I used to take Logan and Halo (our dog) to a men's breakfast at our church, and even if they were not tethered, Logan would be much calmer if Halo was there.

How can a church help?

One way is to make sure that service dogs are welcome in your building. Public places are required to allow access but that doesn't stop some places from trying to stop it. We were once asked to leave a store even though we were well within our rights. It is a good idea to have this conversation with your leadership before a family with a service dog shows up.

Another way that churches can help is to find out if there is a local family seeking to get a dog. The dogs are expensive (at the time we got our dog over a decade ago, it was $12,000) and families need to raise their own funds. It would be amazing if churches helped do fund raising for these families.

The final thing is simply to be aware of their purpose and role.

There are many organizations that provide service dogs, but the organization we worked with was National Service Dogs. You can find out more about service dogs at their website.

Did Jesus Have a Disability?

People with disabilities have not always felt valuable. This includes the context of the church. Are disabilities just a reminder of all that is not right in the world?

But what if Jesus had a disability? I'm not suggesting that he had autism or was lame. But consider this passage:

 In your relationships with one another, have the same mindset as Christ Jesus:

Who, being in very nature God,
    did not consider equality with God something to be used to his own advantage;
rather, he made himself nothing
    by taking the very nature of a servant,
    being made in human likeness.
And being found in appearance as a man,
    he humbled himself
    by becoming obedient to death—
        even death on a cross!
Therefore God exalted him to the highest place
    and gave him the name that is above every name,
that at the name of Jesus every knee should bow,
    in heaven and on earth and under the earth,
and every tongue acknowledge that Jesus Christ is Lord,
    to the glory of God the Father. (Philippians 2:5-11)

Many people see the cross as the greatest sacrifice that Jesus experienced. But what about the incarnation? God the Son became a human being!

One of the first heresies was not doubts about Jesus' divinity but about his humanity. Some could not believe that Jesus really became human and that he must have only seemed to be human.

But the incarnation teaches that Jesus really became human. He emptied himself. If taking on humanity with all of its limitations is not a disability, what is?

People with disabilities should not feel out of place in churches. They should feel right at home because the foundation of Christianity is about the worship of the disabled God.

5 Ways to Support a Family With Autism

Perhaps you know a family that has someone with autism and you desire to support them. But what can you do? I would like to offer five things that you could do to help this family.

1. Treat the family with love and respect rather than pity.
2. Provide some respite by watching their child so that the rest of the family can do something they have been hoping to do.
3. Take the siblings of the child with autism out for a fun activity.
4. Talk to the family member with autism and treat them with respect, even if they seem to ignore you or are not listening.
5. Pray for the entire family. You can tell the family you are praying if you wish. But do not tell them you are praying for healing from autism and that they should expect "normal" any time soon.

Bonus Item: Educate yourself on autism so that you can speak to them intentionally. It might not seem like a big thing, but it is.

The Biggest Need For Families With Disabilities

I may be too presumptuous in making a judgment about all families with disabilities, but I'm at least confident that this applies to a good majority of families. I believe that the biggest need for families with disabilities is respite.

What is respite? Respite is when someone watches your child so that the family can either get some rest or do some activity that they wouldn't normally do. It could be for a couple of hours or even for a weekend. This is not babysitting, as caring for a person with a disability is more complex.

The biggest need is not finding money to pay someone, the biggest need is finding someone to do the respite. There were many times that we had funding to pay for respite but had no one who would do respite for us. I have recently heard of other families going through the same thing.

Why is it so difficult? I assume that many people are intimidated by the idea of caring for a person with a disability. While it isn't for everyone, it is also not as overwhelming as some assume.

If you are a church that is looking for a way to minister to families with disabilities, offering respite would be a great place to start. There is a huge need and actually doing it is not that difficult. Consider how your church might be able to make a difference in this area.

Autism and Sensory Overload

One of the things that many people with autism experience is sensory overload. There are too many sounds, sights and smells and it becomes overwhelming. This video was created to help people without autism to understand what people with autism often experience.

Preaching on Disabilities

I truly believe that the pastor needs to take the lead on helping a church to become disability-friendly. This can happen in many ways, but one is to preach on disabilities. There are a number of passages that deal with disabilities that would make for a good sermon.

Here are some suggestions:

Now Jonathan, Saul's son, had a son crippled in his feet He was five years old when the report of Saul and Jonathan came from Jezreel, and his nurse took him up and fled And it happened that in her hurry to flee, he fell and became lame And his name was Mephibosheth. - 2 Samuel 4:4

You shall not curse a deaf man, nor place a stumbling block before the blind, but you shall revere your God; I am the LORD. - Leviticus 19:14

'Cursed is he who misleads a blind person on the road.' And all the people shall say, 'Amen.' - Deuteronomy 27:18

"In that day," declares the LORD, "I will assemble the lame And gather the outcasts, Even those whom I have afflicted. "I will make the lame a remnant And the outcasts a strong nation, And the LORD will reign over them in Mount Zion From now on and forever. - Micah 4:6-7

"Behold, I am going to deal at that time With all your oppressors, I will save the lame And gather the outcast, And I will turn their shame into praise and renown In all the earth. - Zephaniah 3:19

Top Five Posts!

I have enjoyed sharing information about autism and other disabilities on this blog. There have been certain posts that really seem to have connected with people. Here are the top five posts from this blog.

1. What to Do When You See an Autistic Child Having a Meltdown
2. What I Would Look For in an Autism-Friendly Church
3. 5 Things You Should Know About Autism Parents
4. What If Your Church Can't Start a Disability Ministry?
5. Autism Infographic

If you are looking for more, I blog from to time on autism on my personal blog.

Autism and Holiday Dinners

As I write this, it is the Canadian Thanksgiving. We were blessed to have extended family with us for a delicious turkey dinner. It was an enjoyable time. However, our children with autism did not join us for it.

We did have our children with autism visit this weekend (they live in a group home). They came yesterday and left this morning before the rest of the family arrived for dinner.

We could have had our children with us for the larger dinner. However, larger groups tend to stress them out and it generally makes things difficult. We had a much more pleasant pizza dinner with them last night with just my wife and I and our five children.

It is not that we are embarrassed of our autistic children that we feel pressured to separate these events. Forcing our two children into a stressful situation would not be fair to them.

Why do I share this?

Because most families take it for granted that they can gather for a holiday dinner. Most families have no idea that there is a segment of the population for which this is very difficult.

I share this not to complain. We actually had a nice Thanksgiving, including (especially?) the visit from our children. I share this to spread awareness. Now you know.

Disability Ministry is Not Just to Those With Disabilities

Disability ministry is extremely important. Churches must be reaching out to those with disabilities. But that should not be the only goal for disability ministry.

While not taking away from the needs of those with a disability, disabilities affect the entire family. Much of the contact that I have is with parents of children with disabilities. I know from experience that it is not easy. There are all sorts of financial, physical, emotional and spiritual challenges that go with being a parent. The same is true with being a sibling.

If your church wants to become disability-friendly, you need to take a wholistic approach. Yes, provide a safe and welcoming place for the person with the disability. But consider how you can minister to the rest of the family as well. You can really make a difference.

Why Do People With Autism Stim?

If you met our son, you would find him with a square-shaped toy in a sock covered with some plastic. If you met our daughter, you would find her with a CD or DVD held up to her face. This is called stimming. What is stimming? Find out in this video.

 

The Side of Autism You Don't Want to See

We all love to see the stories of people with autism who are exceptionally bright or who have a savant ability. We are encouraged when we see people with autism who become very successful.

We need to see those stories but we need to balance them with the other side of autism.

In this video, you see a mother trying to comfort her daughter who is having a meltdown. We have had many experiences like this. It is never easy.

If you are church that wants to welcome families with autism, realize that this is one of the reasons why some parents are hesitant to attend church.

What Does an Autism Meltdown Look Like?

One of the misunderstandings about autism is that meltdowns are simply temper tantrums. An autism meltdown is so much more.

This is a good video of a meltdown that also includes the mom talking to her son about it afterwards. It is very helpful.

Living With Autism

Presented and narrated by actor Hugo Weaving, this animation looks at the key characteristics of autism as experienced by his 16-year-old nephew Ky Greenwood. The project was part of Sentis' “Great Works” program and was inspired by Ky’s father William who is part of the Sentis team. Autism Queensland is proud to support this film.

Where Do Autistic Children Belong in Sunday School?

What I'm going to talk about here is relevant to many disabilities, but since autism is my experience, I will focus there.

If you have a child with autism in your Sunday school, should you place them with other children of their age level or with other children of their intellectual level? I'm speaking here of children who are on the severe end of the spectrum, not those on the mild end.

It might be tempting to just put the child with autism with the younger children and let them watch some Veggie Tales. That might be easier, but is that the best way?

One thing to keep in mind is that it is very difficult to determine the intellectual level of a person with severe autism. Often the communication challenges make testing intellectual capabilities quite challenging. For example, many people consider our son to be "low functioning" because he is nonverbal, but in fact he is very intelligent.

I would suggest that the best option is to put the child in an age appropriate class, but with sufficient help. Never underestimate the benefits of being able to model behaviour based on peer relationships. This can be a difficult option, especially with a lack of resources, but it should be the goal.

Why You Should Attend Life to the Full

I had the opportunity be filmed for a promotion for the Life to the Full conference. I'm on the planning team for this conference and I can't recommend it enough. Watch the video below for why I think you should attend Life to the Full. Registration closes Oct. 3, so register today!

Life to the Full Conference with Stephen Bedard from Julie's Photograph on Vimeo.

What is Autism?

Learn about the nature of autism from a person with autism.

Good News: Happy Birthday Abby!

Although my website is back up, I'm not posting there until I have transferred to my new host and I do a bit of redesign. So once again, I will do my Good News post on this blog rather than my other one. That is fine as my good news is autism-related.

Tomorrow is our daughter Abby's fourteenth birthday. It is hard to believe that she is this old already. It seems like only yesterday that we were bringing her home from the hospital.

Abby is a major daddy's girl (just like Logan is a momma's boy). We have always been very close. It was one of the hardest things when she went off to a group home. But we have made good choices that have strengthened our relationship with her. We get regular visits with Abby and they are always lots of fun.

On our most recent visit, Abby was super-hyper. There was lots of giggles and jumping around. It is so good to see her happy.

Happy birthday Abby! We love you!

4 Things Not to Say to a Parent When a Child is Diagnosed With Autism

No matter what a person thinks of neuro-diversity and the positive aspects of autism, it is always difficult when a child receives a diagnosis of autism. There are a thousand things going through the parent's mind. It is natural for family and friends to want to encourage and comfort the parent.

Sometimes it is better to say nothing rather than to say the wrong thing. Here are four things that you should not say. These are things that have been said to us.

1. "God knew you were such great parents that he chose to give you a child with autism."
2. "Don't listen to the doctor, your child doesn't have autism. They are just a late-bloomer."
3. "Autism is not that bad. I know a family..."
4. "At least it is autism and not some terminal illness."

Don't try to explain why the child has autism. Just be there for them and let them express their feelings the way they need to.

5 Things To Do When a Child With Autism Makes Noise in Church

Children with autism are known for making noise in church. Sometimes they say what some adults want to say. One Sunday, our son said with a fairly loud voice during the service, "Just kill me now!" In case you are wondering, I wasn't preaching at the time.

You need to realize that parents are very aware of the noise their children make and it is always easier to just stay at home rather than to risk uncomfortable situations. How people in the church react will determine if those parents will ever return to the church.

Here are five things to do when a child with autism makes noise in church.

1. Do not allow yourself to give the parents a dirty look. They know their child made the noise. Your dirty look will not help the situation and will likely make it worse.

2. If you do look at the parents during the noise, look at them with a smiling and caring face.

3. Say a prayer for the family. Not a prayer for the child to shut up but a prayer for calmness and peace for both the parents and the child.

4. Give thanks to God that a family with autism has been willing to come to your church.

5. Make a note to talk to the parents after church and tell them that you are glad they are a part of your church family.

Coping With Autism and Puberty

While we often hear about the people with autism who are the mild end of the spectrum, there are people who are on the more severe end.

This video is a good picture of what it is like to have children on the severe end. These two boys are very much like my own two children. I encourage you to watch this video.

What If Your Church Can't Start a Disability Ministry?

There are some large churches that have very organized and well staffed disability ministries. They have a sizeable budget and may have a specific pastor or other staff member overseeing it. These are the ministries that we often hear about.

But what if you are at church like mine? We are a small church with one pastor and not enough resources to have a specific disability ministry. We have two people with autism in our congregation and it would be difficult to build a ministry around them, especially since once is a child and the other an adult.

I want you to hear this one thing:

YOU DO NOT NEED A DISABILITY MINISTRY TO MINISTER TO THOSE WITH DISABILITIES!

Think about it this way. Our church does not have a specific men's ministry and yet we minister to the men in our congregation. Ministry does not have to mean separating one group away from the others. We minister to the men, the same way we minister to everyone in the congregation.

The same is true for those with disabilities. I care for the people in our congregation with autism, not because they have autism, but because they are a part of our church family.

Now I understand that disabilities can produce some unique challenges. Physical disabilities are accommodated by making the building wheel chair accessible and having elevators. Developmental disabilities will need their own accommodations.

I will not go into details about how exactly to do that, as there are many posts on this blog, as well as my book, How to Make Your Church-Autism Friendly, which give practical tips.

The main thing is that a church not turn away a person with a disability just because they don't have a disability ministry. We would not turn away men because we don't have a men's ministry. You minister to people with disabilities the same way you minister to anyone, by loving them, treating them with respect and pointing them to Jesus.

Good News: Love My Kids

Since my main website is down again, I will write my Good News post here. I do a weekly Good News post on my blog as a way of trying to stay positive.

This past week, we had our two children with autism come for a visit. It was nice in that our other three children were away at camp and so things were a bit quieter in the house. It is difficult having our children living in a different city but there are good things. We get to see them regularly and the overnight visits are going very well. Our relationship with them is much better now than it was when they lived with us. We can enjoy them without all of the daily stress that comes with autism.

We have a lot of fun with our children and that is good news.

Enjoying some Mac & Cheese together!

In This video, my daughter shares her opinion of my singing.

The Hardest Thing About Autism

I want to make it clear that what I'm about to say is my experience and is not meant to describe the experience of any other autism parent.

I understand that there is pressure from within the autism community to not see or speak of autism in a negative way. I hear those concerns, especially from those who are on the milder end of the spectrum.

Having said that, I have two children with autism, aged 13 and 15. Since they were diagnosed at an early age, autism has been a part of our life for a long time. We have had a lot of great times and a lot of difficult times.

Being scared of them running off, destroying property and hurting siblings has all been difficult. But there is something else that is harder for me.

It happens when I meet children the same age as my children and realize how far away they are from "normal." I know that I'm not even supposed to speak like that, but I don't know how else to describe it. These children have friends, get part-time jobs, prepare to get their driver's license, think about what they will do for a career and so on.

Our children are both nonverbal and I would love to be able to have a normal conversation with them. The autism affects their behaviours in such a way that they live in a group home and not with us. Other parents take for granted these simple things that they can enjoy. But for parents with children on the severe end of the spectrum, this is a daily grief.

I do not resent other children who are not affected by autism the way our children are. But it is a difficult reminder of hopes and dreams that ended with a diagnosis.

Top 10 Famous People with Autism

Autism and Food Issues

Autism can affect the way people are with food. One of those issues is pickiness, but that is a topic for another day. Children with autism can also get completely focused on food and desire to consume food in ways and amounts not considered appropriate.

We just had a visit with our two children with autism. Our son is not too bad. He is mainly focused on fruit. If there is a bunch of bananas out in the open in the kitchen, he will finish it off one by one. He will do the same thing if there is a bag of apples. He would think nothing of having a dozen apples, one after another.

We have more issues with our daughter. We have to hide the hot chocolate mix when she visits because she will eat it by the handful. She once mistook cinnamon for hot chocolate. That was interesting. She chugs maple syrup from the bottle. When she lived with us in a previous city, we needed a door on our kitchen to keep her out. We don't have that option here. During her visits, she probably rushes to the kitchen every 10-15 minutes to try and get food. It can be stressful. There is a reason why there is a door to the kitchen at her group home.

I know that our children are not the only ones like this. While not everyone with autism has these issues, I have talked to other parents who have experienced this.

This is a part of what it is like to live with autism.

What Happens to Children With Autism When They Become Adults?

Autism Parent's Worst Nightmare

This is not the care for every autism parent, but I know that it is for many. In fact it has been for us. For a certain number of children with autism, there is a desire to run. Not to run laps for track but to just take off. Unfortunately, some of those children never make it back. There are too many stories of children with autism who have gone missing and then eventually are found dead.

While our daughter is not a runner, our son is. He has taken off many times from our home. Legally, parents are not allowed to lock their doors and so anything can happen during the night. We have tried a number of things to keep him in, once even piling boxes in front of our front door. The only thing that really worked was to get a lock that you had to enter a code to unlock the door. Even now, when Logan visits from his group home and stays overnight, I sleep on the couch so that I'm more aware of where he is during the night.

Once our son opened the door, took off all his clothes and then took off. It was winter and we lived on the water. It could have gone very bad. Thankfully he was found safe. There was another time when he went missing for a number of hours and we really thought we had lost him. I tell the story in this article with ChristianWeek.

I share all this, not to complain, but to let you know that many parents fear they are going to receive that bad news from the police that they found their child's body. It is really any parent's worst nightmare.

Differences Within the Autism Community

What is the autism community? Obviously it includes all people with autism. But it also includes, at least in some definitions, the families of people with autism.

How does the autism community feel about autism?

It depends on who you ask. There would be plenty of parents that hate autism. They see it as a terrible disability that robs families of hopes and dreams. Autism sometimes destroys marriages and makes life miserable. Let me make it clear, that is not the experience of all families with autism. But I will say that in our experience, we have had many "I hate autism!" days. Even in our most recent visit with our children, there were things that happened that reminded us of how much we can dislike autism.

But if you ask people with autism, especially those on the milder end of the spectrum, you might get a different answer. They might find any negative connotation to autism or even its description as a disability as being highly offensive. Autism is as part of a person's identity as much as one's ethnicity or gender, and there can be nothing negative about it. Any attempt to see autism as bad is seen as "ableism."

What do I think? I have a foot in both worlds. I am on the autism spectrum and I have two children with severe autism. I see autism as one of my strengths (see my book The Autistic Pastor) and yet there has been much grief that has gone with the autism of my children. I wish they didn't live in a group home. I wish they were not nonverbal. I wish they could get jobs and start families. There is much that is lost because of autism, at least from my perspective.

Are there answers to these differences? The only answer is respect. We need to respect those who have autism and value that part of who they are. But we also need to respect the pain that parents of children with autism go through.

Feeling Uncomfortable Around People With Disabilities

I have two children who are on the severe end of the autism spectrum. They are considered disabled. But I must confess there are times that I'm uncomfortable around other people with disabilities.

There I said it.

Judge me if you want.

I don't know why this is. It happens more often with physical disabilities. It has become less since my children were diagnosed, but it is still there. I don't think I'm alone.

Why do people feel uncomfortable with disabilities? I suspect part of it might be that physical disabilities remind us of how fragile and uncertain life can be. Perhaps disabilities in general make us question the goodness of God. Why does God allow any disabilities?

I think that it is important, if a church is going to become disability-friendly, to address this common reaction and not pretend that it doesn't exist.

How do we respond to these feelings? We shouldn't respond with self-condemnation. That doesn't do anyone any good. The most important thing to do is to get to know the person with the disability. As the relationship develops, the disability slips into the background. It doesn't disappear, but it is no longer the defining factor.

For a while, our daughter went through a lot of workers at her group home. People were afraid of her and there was a high turnover. This seemed strange to me because I knew Abby and didn't see anything to be afraid of. But this was because I saw Abby as my daughter and not as a person with autism. For those who first meet Abby, it will take some time. But it is worth the wait.

So my advice is to acknowledge the feelings but don't let them control you. Enter into relationships and love the people for who they are.

The Assumption of "Normal"

It is common that when you meet new people, that you ask each other about family. I tell people that I have five children and they respond by asking about ages. When they hear that I have two teenagers, they often respond with common understandings of what teenagers are like.

The truth is that my teenagers are not typical. They have autism, are nonverbal and live in a group home.

I have a moment in which I decide whether or not to explain our situation. I'm not embarrassed by my kid's autism. It is just sometimes a pain to go into the details and I hate the look of pity that I frequently get. Often I just nod my head and pretend that I know what teenagers are like.

People make the assumption that your children are "normal." By normal, I mean without disabilities. I'm using other people's definitions here, because I think my kids are pretty normal. There are times they seem more normal than our children without autism!

Why do I bring this up?

I'm not suggesting that people don't ask about families in case someone is offended. Nor am I suggesting that people shouldn't assume that children are typical. Most often they are going to be right.

I guess I'm just sharing this because it is something that I go through regularly. I never resent the person that asks. But there are days that it stirs up the feelings of missed opportunities. I'm telling you all this, not to change what you say, but to let you know that there are complex feelings that may go along with the answer.

Autism Lives Matter

A fairly recent story included a therapist (who happened to be black) who was trying to bring a man with autism back his home being accidentally shot by police. With all of the racial tension in the United States, it was later revealed that the police officer was trying to shoot the autistic man and not the black man. I'm not sure how much that revelation helped things. You can read the details here.

This post is not meant to be anti-police. I am so thankful for our police officers. They put their lives on the line every day. I can't imagine what the officer who was involved in shooting must feel. He has to live with both the shooting of an innocent man and the attempt to shoot a man with autism. This officer, like all officers, is put in positions where he has to make serious decisions with very little information. In this case, the report was that there was a man with a gun. He had to take that report seriously.

So what am I trying to say?

People with autism offer a special challenge to police officers. Police have certain steps that they use to de-escalate a situation. If the suspect responds correctly, most of the time everything works out fine. But there are no guarantees that a person with autism will follow the commands given by the officer. What are the police to do?

I have no easy answers. I am thankful to hear that there is an increase in training about autism within many police departments. Education will be a big help. It is also crucial that officers be given the correct information, including the person's ability to communicate.

We need to pray for our police officers as they navigate a very confusing world and attempt to keep us all safe.

How Veggie Tales Saved My Life

Well actually Veggie Tales didn't really save my life. But is sure helped make my life as an autism dad easier.

Our daughter, Abby, had some pretty bad sleep disruptions. For some reason, she just would wake up between 1 and 3 am. Every night. It was pretty rough.

I finally found a way for me to get her back to sleep. But I had to do the same thing every time. When she would wake up, I would bring her upstairs and I would give her a rice cake and a cup of milk. Then I would put on the Veggie Tales video, King George and the Ducky (because I knew it was only a half hour). The key was to tell Abby before the video started and about half way through that as soon as it was done, she would be going back to bed. I had to make this announcement before the video was finished. It didn't work every time, but it did probably 80% of the time. And when you are talking a nightly occurrence, that makes a big difference.

I share this just to give you a glimpse of what it is like to be an autism parent.

The Autistic Pastor

I don't talk about it a lot, but I was diagnosed last year with what was once called Asperger's Syndrome and is now considered "high functioning" autism. What was it like growing up with autism (and now knowing I had it)? How did I find out I had autism? What is it like being a pastor with autism?

I recently wrote a short book talking about my experiences. It is called The Autistic Pastor and it is available on Kindle. If you have Asperger's or know someone with this forms of autism, you might find my story interesting. Make sure to check it out.

Pastors, Church Culture and Disabilities

What is the culture of your church when it comes to disabilities? Does your church eagerly embrace those with disabilities? Or is your church embarrassed by the sights and sounds and frustrated by the interruptions?

There are many aspects to church culture but I would suggest that the pastor plays a major role. I believe that many people look to the pastor for the cues on how to respond to those with disability. Does the pastor greet and spend time with people with disabilities or do they ignore them?

What does the pastor do when a person with a disability makes noise in the middle of a sermon? Most (but not all) will not ask the person to leave. It is more about the expression on the face. Does the pastor grimace and then reluctantly move on with the message?

I recently did a funeral and I noticed that there was a child with a disability. During my message he started to make noise. I could tell that the parents were frustrated and embarrassed. I just smiled because, as a father of two children with disabilities, I was just glad that the child was there.

Once we were attending a church and our son with autism was there. He made a particularly loud sound during the pastor's message. In this case, the pastor actually stopped and then said to the congregation, "Isn't great that everyone is welcome here?" In that moment, that pastor showed real leadership. He made it clear to the congregation the culture that he was seeking to build. It is an experience that had really stayed with us.

My word to pastors is to show leadership in building a culture of acceptance. Think about what you will say and do. People are watching you and looking for your lead.

Autism Can Include 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.

This is What Autism Looks Like

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

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.

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.

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.

Why the Church Should Care About People With Disabilities

Life to the Full Conference from Julie's Photograph on Vimeo.

You can find out more about the Life to the Full conference here.

Where is God in Severe Autism?

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.

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).

The Other Side of Being an Autism Dad

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.

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.

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.