It will soon be Valentine’s Day. As Alex says, “A time to cherish your loved one with overpriced chocolates to feed the big machine called capitalism”. I can’t really argue with that statement.

Lately there has been a lot of media attention placed on dating and autism. There are some heartfelt stories about the struggles of individuals on the spectrum with developing relationships and sharing love. If you ever get a chance to watch the show “The Undateable” – it will make you laugh and cry. Alex has always expressed a desire to meet someone who will be his “soul mate” and he has made it very clear what his sexuality is – in fact, a bit too clear at times.

Nothing however has caused more stress, tears and struggles than how Alex deals with his emotions. He, like many others, is just is a young man struggling with immature and confused thoughts. We try our best to discuss his thoughts and teach him about appropriate behaviour and interactions with others, especially those that he may have an attraction towards. Expressing what he is thinking “out loud”, while it has led to a lot of laughter, has also led to unfortunate circumstances and consequences, and many lessons learned. It is important as part of our awareness of people with autism to recognize these possible circumstances.

When Alex was about 14 he would insist we only go and get his hair cut at the same place by the same young woman. When we asked why he wanted to keep going to the same place he said, “Well, I really like her sex”. Translation – I really like her. He once asked a good friend of ours if she could hug him a bit longer as he really enjoyed her body. This of course led to a long conversation and discussion about relationships and feelings and appropriate behaviour.

Alex was with me once while we were grocery shopping and I realized more conversation was needed. Alex would often put things in the shopping cart and I wouldn’t notice until it was too late at the check out. Most times it was something I would ignore and remind him to just ask me next time. I can recall being at the checkout at Costco and watching a large club pack of condoms being loaded into the cart. “Wait a minute, sorry those are not mine” I said to the cashier and then turned and looked at Alex. “Oh right, sorry mom, those are mine. I just need to practice”. The cashier found this quite amusing. She replied, “Wow that is a lot of practicing”.

By the time Alex got to high school he had a lot of support and fellow classmates to help remind him of how to deal with his feelings and appropriate behaviour. I can recall a time when his sister had a sleep over with her friends, many of whom Alex knew from school. They were all up late sitting around in a sea of sleeping bags in the basement when Alex walked in. “Hey ladies!” he said. “Sorry to disturb you but I just thought I would drop by to say hello – wink wink”. “Alex” his sister yelled, “where did you get that beer?” He then proceeded to squint his eyes in an attempt to chug back the beer. “Okay” said Zoe “you can leave now and go and put the beer back”. I don’t think he impressed them. This led to a long conversation with his Dad.

Having a mind filled with media clips from films and TV shows is amazing but can be very problematic. Separating what is appropriate to say rather than just pulling a saying from his mind is where Alex really struggles and I am certain so do many others on the spectrum. “Well hello sexy lady” is not the best way to say hello to a young woman he meets for the first time but he has said it – more than once. Only to be followed by “let’s you and me skip the small talk and get out of here”. A good friend of mine once gave Alex a ride and he asked her several times whether she was married and maybe they should just head straight to a Vegas hotel! Of course I don’t have to repeat the story about his dream of marrying a beautiful asian girl.

Still I have to laugh when he asks questions about sex or makes statements about women having babies or going through menopause. He certainly has his facts straight and has never been shy to share them. He recently asked a pregnant woman in the middle of the grocery store if she found the pressure on her perineum causing her to urinate a lot because she was carry a big baby. Her puzzled look and hesitant response of “a little bit I think?” was a much different response than that of her husband who clearly did not know what to think. “What is wrong with you?” was her husband’s response. To which Alex replied “Oh me, nothing wrong, well I do have autism, but otherwise I am healthy and actually weighed a lot as a baby too”. Alex also recently asked a woman at the gym if she was struggling with “menofall” issues like his mom because she was  “really red in the face and sweating a lot too”. No comment.

What is amazing to me, however, is that while Alex may not say appropriate things sometimes, and has confused thoughts about how to express himself, I believe he does know what love is. A few years ago we had family visiting from overseas and we made the trip to Niagara Falls. We were riding on the new Ferris wheel, which stops a few times at the top to give you a great view of the Falls. Alex turned to us and said “now this is where I will propose to my future wife one day. This is a romantic spot. This is where I will tell my future wife I love her.” I just smiled with the hope that there will be a “one day” for Alex.

For now I hope he can continue to work on his social and relationship skills with the support and understanding of people around him and develop a maturity to be able to have a meaningful relationship one day. Maybe buy that overpriced box of chocolates and grow old sharing love with someone special to him.

Alex has had many fixations throughout the years. He has memorized some movies almost in their entirety. It is a memory skill that is quite remarkable and shared by many others I have met with autism.

When Alex was about 5 years old, he became fixated with How the Grinch Stole Christmas. First it was the Dr. Seuss book, which he would want his Dad or I to read every night. Of course you could not skip a page or even a word without him knowing and correcting you by adding in the word or even the page you missed. Having memorized the book, he would watch the short film (I think VHS tapes still existed back then) and he would replay certain scenes over and over again until the tape literally wore out in those parts and we had to buy a new one. Today he can still recite most of the book and the film line by line. He has the voice of Boris Karloff down to every tone.

In the late summer of 1998, I will always remember an event that occurred that was both frightening and humourous. On the scary side there is no worse feeling than knowing your child is missing. Alex went missing just before dinner. I remember frantically trying to find him in the house thinking he was hiding. When we could not find him, Vern set out on the street to start looking. I went to my next-door neighbour’s house in a panic and they immediately started searching. “Where do you think he would go?” said my one neighbour. “Should one of us go to the park?” I remember thinking to myself with great intensity “where would he go?” I remember asking, “Can someone walk towards the convenience store” and off another neighbour went. I remember someone yelling out “if anyone finds him just bring him back” and telling me to wait at the house.

What seemed like hours was really only minutes when I saw a woman a few houses down talking to one of my neighbours and pointing to the house. My neighbour waved for me to come and we walked into the house. I then realized, looking at the large moving van in the driveway, that this woman was in the process of moving in and no one had met her yet. Well no one except Alex.

Alex was standing in the front hallway with a young girl who I assumed was the daughter. She was grinning and told me “he is very funny”. I grabbed Alex and gave him the biggest hug and with tears running down my face saying, “why did you leave the house? Don’t ever do that again”. I then realized Alex had a large pillowcase in his hand that was full of heavy objects weighing him down preventing me from picking him up.

The woman explained that they were moving in and as they were unpacking they heard a noise in their kitchen. They walked in to find Alex filling a pillowcase with their newly bought food. She said at first she thought it was the boy who used to live in the house and he had come back to get something. She said when she asked him “hey who are you and what are you doing with that pillowcase?” he replied “ why my little sweet tot…there’s a light on your tree that won’t light on one side so I’m taking it to my workshop”. “Okay” she replied. “ I think maybe we need to find your parents”. “ I’ll fix it up there and bring it back here” Alex continued. That’s when she walked out to the street and my neighbour asked her if she had seen a young boy. “Ah yes, he is in our house with a pillowcase acting strange and calling me tots – oh yes I have seen him” she said.

It turns out Alex had taken the pillowcase from our house and filled it up with a few items from their hallway – newly unpacked books, keys and some yogurt tubes, cheese and a package of ham from the refrigerator.

As I put the items back into their fridge and I went into my “ I am so sorry, you see my son has autism and sometimes…. and I am so very sorry” the daughter said “it’s okay – he is really good at that Grinch voice – he should become an actor one day.” At this point the mom just smiled and with Alex in hand I just smiled back and said, “well …welcome to the neighbourhood”. Of course my other neighbour was laughing out loud at this point. Luckily no one got hurt, nothing was damaged, except some yogurt tubes that were a bit warm going back on the shelf.

When I reflect on this event I am forever thankful for such great neighbours old and new, and for their understanding of autism. And to quote Dr. Seuss “Sometimes you will never understand the value of a moment until it becomes a memory”.

Aerosmith, $20 and a Flake

I remember reading an article that talked about how people with autism have an inability to exhibit certain emotions such as compassion or jealousy. While I believe there are many on the spectrum that struggle with emotions, everyone displays emotions in very different ways. Some wear them on their sleeves (yours truly). I said this to Alex once and he just looked at my wrist and asked, “Where are they?”

Alex has actually never exhibited jealousy but definitely has shown compassion. This seems to have become more apparent as he has grown older. When Alex was about fifteen I remember walking past an older man in a wheelchair on a busy city street. The man had a sign on his chest that read, “Please Help a War Vet”. Alex stopped and asked him, “What happened?” The man told him he had lost his legs in an accident. Alex then said, “Do you have someone who takes care of you?” The man replied, “No I can take care of myself”. Alex then said, “ Well why do you need help?” The man just looked at Alex and shook his head. Alex said, “I can’t help you right now because my mom and I are going to see a concert. I can ask her if she can get an extra ticket – do you like Aerosmith?” “No thanks” the man replied and gestured for Alex to move along.

Many of us never stop to talk to people who are on the streets. In fact we often tell our kids to just walk by them and don’t talk to them. I have been guilty of this. In Alex’s case I often tell him not to stop to talk to them because I want to avoid a possible altercation as Alex often feels the need to find out why they are homeless or asking for money and what they are going to do with money if they get it. I have watched Alex reach into his wallet and hand over a $10 bill to a young guy sitting on a corner. Try asking for that back by explaining “oh I am sorry my son doesn’t understand, he has autism, he didn’t mean to do that can you hand that back” That is clearly not going to happen so trying to avoid the situation becomes the best course of action.

So the conversation is a delicate one with Alex. While we are thrilled that he has compassion in his thinking register we need to tell him he cannot give all his money away and he needs to use discretion and be cautious around people. People have and will take advantage of someone like Alex. This has become even more important as Alex works on his independence as an adult and he continues to learn from life’s experiences.

When Alex was attending school last year he had to transfer buses at the main terminal which was in an area that was known to have a number of transient people. I never forget receiving a call from Alex stating that he had taken the wrong bus and missed his transfer and that it was okay because he had met a guy named Jim and while he was a “bit” lost they were just going to hang out for the rest of the day. I told Alex to stay where he was and that I would come and get him. I drove to the bus terminal and pulled over on a side street and called Alex. “We are on our way,” he said. I thought who are “we”? I then saw Alex approaching the corner with a guy behind him wrapped in a sleeping bag. They both came up to the car window. As I rolled it down Alex said, “Hey mom this is Jim. He’s homeless. I gave him $20 and bought him a flake (the British chocolate bar) and told him he could come live with us”. The mixed aroma of pot smoke and a sleeping bag that has never been washed seemed to circle around Jim’s presence. He, Jim, just smiled and gave me a wink. “Sorry Alex, Jim can’t come live with us right now. I’m sure he has people here who can help him out here and we don’t really know him that well. Sorry Jim we really have to go.” “But mom, I told him he could!” “Alex we can talk about it later but we have to go,” I said. Jim just smiled and shrugged his shoulders. Alex said, “Well Jim I guess it’s adios, don’t spend the money on drugs.”

I actually think Alex has taught me to be far less judgmental and far more compassionate – both good qualities. And I thought I was the only one who liked flake chocolate bars!

To quote Dr. Temple Grandin, “there needs to be a lot more emphasis on what a child can do instead of what he cannot do”. In June of every year there are so many proud parents of young adults who, after many years, are finally completing their high school education and graduate. Several of those students have overcome many hardships to graduate and parents, educators and the students themselves get a chance to celebrate what they have accomplished.

When Alex was diagnosed with autism, the prognosis was “you should not expect too much”. We were told Alex would likely have “difficulties in school, probably not graduate and have several behavioural issues”. I suppose that is part of providing any prognosis (having to consider the worst case scenario) since no one knows what lies ahead or how much effort and time parents and others will put into doing everything they can to do the best for their child.

One of the happiest days of our lives was the day Alex graduated from high school with his diploma. “Probably not graduate?” So much for that prognosis! The joy I felt that day did not come however from the piece of paper Alex received, it came from something else.

Alex participated in the convocation with all of his fellow classmates in June of 2011. There must have been over 200 in the graduating class that year. Alex was part of an amazing high school with a program for Autism Spectrum Disorder (‘ASD”) kids, which provided an integrated and supportive setting (yes there are great programs in our school system and some incredible and dedicated teachers and staff). We were certainly blessed.

Alex and the other two ASD students had practiced over and over again what would happen at convocation – where they would sit, who they would sit with and what they had to do. Since the students were called up in alphabetical order, there were kids they didn’t know very well beside them. These students were asked to help out with prompts so the ASD students would know when to go up on stage and how to receive their diplomas. I can imagine these students were nervous enough themselves but happily agreed to help.

I remember my greatest fear was that Alex would become so restless and agitated (it is a very long time to sit) that he might just get up and leave. If he did make it through, at least up to the “G” names, as he walked on stage he would yell out “Cleveland Rocks” or re-enact a scene from a movie where kids graduate and do something crazy like frisbee their graduation cap into the audience or worse (I will leave this to your imagination). None of these things happened. What did happen, however, was quite a surprise.

As each student’s name was called, there were shout outs and cheers and clapping. We were waiting patiently through all the students, “A through F”, and finally they began calling the “G” surnames. At this point my heart was pounding. Then, it was down to two students before Alex was to go up and we (Zoe, Vern and I) were nervous wrecks. I kept thinking please don’t yell something out or start dancing. Please don’t high five Father Dave (although Father Dave was pretty cool so that might have been okay).

I watched Alex approach the bottom of the stage. He waited for the student in front of him to be called. The student behind him then prompted him to go forward and up the stairs as his name was called. Amazingly, Alex walked up shook the principal’s hand, shook Father Dave’s hand and shook the vice principal’s hand and now had his diploma in hand with the biggest smile on his face. He did it! I was so relieved. Now my eyes were full of tears. I was so proud of what he had accomplished but also moved by what happened as Alex walked across the stage. As he went up on stage and his name was called there was the loudest eruption of clapping and cheering from the students and the entire group of teachers rose to their feet to give him a standing ovation. I then watched them repeat this for each of the ASD students.

That moment is forever in my mind. It reminds me that it is not what these children and adults cannot do …it is what they can do. Congratulations to all students graduating this June especially those on the spectrum. Many thanks to all the supportive teachers, students and staff who fostered the potential in those students with ASD. Let’s celebrate what they can do and share in that spirit of recognition with standing ovations!