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Navigation the Connection Spectrum: Lessons from Autism

17.


My son is 17 years old this year. Adulthood is right around the corner.


I'm mostly prepared...mostly.


You know - the way you're prepared to have a baby? That kind of prepared.





Through all the conversations and plans of guardianship, living environments, jobs...you know - all the things. I find myself really considering my son's social connections. Connection and relationship take on a different meaning when you have autism in your life. The diagnosis is almost defined by the challenges inherent with creating, and maintaining social connection.


Yet they still impact quality of life. Through the challenges we are working through I believe there is a lot we can learn about connection with or without a diagnosis.


The Struggle is Real -


First - a little about Jack. He is super smart, incredibly creative, very funny. He likes sports, and YouTube and Mario Bros. Music, photography and video work has started to become interesting for him.


And verbal communication is really challenging for him.


He knows lots of words but struggles with finding them to use, especially verbally. He also has some challenges with abstract ideas. Things are very specific and concrete for him. Add that to the normal difference that people have in perception and misunderstanding can be frequent.


He has had tremendous growth here, AND he will never be a talker.


I didn't do as much as I could when he was younger to really encourage relationship connection for him either (a blog post on it's own). And I believe that has had a significant impact on his way of engaging now.


While I can't know exactly what's happening in his head, it's obvious that he WANTS to connect with others.


He just isn't real sure how.


Because of his autism he isn't always clear on some social expectations. Things like, personal space, consent before touching someone, or what is appropriate to bring up at the dinner table.


These have all become larger struggles as he has aged. While it can be overlooked if a 6 year old gives another child a hug and kiss that same action on a 6ft tall 17 year old young man isn't taken the same way.


It doesn't matter that it's exactly the same to him.


All of this adds up to issues that are both verbal and non-verbal when it comes to creating connection. Without a shared understanding of what is, how do we connect? Universally we know that a smile has a general meaning, and within our communities we understand what it means to say "how are you?". When you don't have that, connecting at any level is extremely challenging.


Watching him try to connect with peers and not knowing really how to do it, is also heartbreaking. (This would be when I would start a rant about the terrible job our schools do at inclusion but now isn't the time). In trying to keep him safe I've even pulled him away from situations where he was trying to make connections...Which is really about my fear, not his.


Combined with all the isolation issues that come up with having a child with a special need you've get a perfect storm which left unconsidered can significantly affect your life.


So I'm left trying to figure out how to help support his need for connection in safe ways with people that don't share his understand for words and gestures.




It's daunting but we've had success. And more importantly I believe I have a clearer understanding about how to build on that success moving forward.


Progress is Progress -


The first place where I've see success is with caregivers. This is obvious but sometimes you need to state the obvious to build on it. His closest relationships are with the people that are directly providing him daily care. His teachers, therapist, me.


I am willing to say without hesitation that there is no one on the planet right now that understands Jack as well as I do. I know what his scripting means. I know what movies and videos he is referencing and most importantly I understand how his brain operates so I can effectively elicit MORE information when I don't understand.


Teaching Jack what and how to engage has also been helpful. We do a lot of this through ABA therapy, which I know is not something everyone in the autism community agrees with but it has been extremely helpful for him. The use of social stories has also been helpful and actually doing the behaviors in the social story is an absolute must for retention.


Most of his therapy goals center around having verbal exchanges. Answering simple questions. Letting people know when he is coming and going. Asking for help. For someone like my son those behaviors need to be broken down into tiny steps that are then built on and generalized to multiple situations. We utilize a lot of scripts for him to help him. Once he knows a phrase he will use it. The secret is not trying to build a lot of specifics into the phrases for him to use. Simple, universally understood phrases.


One that he came up with on his own is "knock knock". He knows that he can say knock, knock to anyone and he will get the same response back - "who's there". That reliability gave him what he needed to be able to make a request. It isn't always done grammatically correct, and it certainly isn't always a joke, but it gets the job done. It's something that everyone around him can figure out easily. (I told you he was super smart).


I've even been able to use knock, knock to find him when I'm not sure where he is...because he knows how to respond. Instead of calling out, "Jack?" when I want to know where he's at I just say, "knock, knock". His response takes me right to him.


Sharing these little things with others near Jack has been useful too. What works for him specifically and what doesn't. This includes neighbors, extended family, and new friends we are meeting in any casual situation.


As an aside I believe you've struck gold when you engage with someone that asks questions about what works for your kid and what doesn't. Put an asterisk next to that person in your phone...they are awesome.


In fact when he began getting more independent in the neighborhood I confronted my fear and posted a FB post to the group page sharing a picture and giving our neighbors the 411 on Jack. He has become the neighborhood mascot. That single post was so helpful in opening the door for dialog to happen with our neighbors and what to expect from him. The post included a disclosure that he was still learning about personal space and instructions for exactly what to say if he needed to stop and come home.


After much searching I've also found an amazing communication app that is available on Android. Many are only available with iOS. If you are looking for a serious communication app that is compatible with Android you must check out Avaz. I wouldn't recommend anything else. We use this app regularly though in a unconventional way. It isn't necessary for him to use it to have the device talk for him, instead we have used it to create choice boards for him so he can more easily access the word he wants to use and say it.


For example, we have built a folder out of restaurants. When I ask him where he wants to go to dinner he can open that folder and verbally tell me his preference. It helps him remember his options.


Building the Future


With an understanding of the challenges we need to work through and an idea of the strategies that have worked so far I can begin thinking about building on that for his future connections. To begin I asked myself, what kind of connection does Jack enjoy.


While his need for connection isn't a significant as mine, determining his level of need is important to me. I want to respect his autonomy and not force him to engage if he isn't interested.


This means asking him questions about his preferences but it also includes observing, verbally and non-verbally, how he engages with people and what he does when he could engage and doesn't. How he's moving his body for example, or what he is scripting. When you are observing carefully it is amazing what you can find.


It also involved me getting real with myself about my own thoughts and feelings about it. I have had two significant moments in facing this, and of course life being what it is they were highlighting feelings I had that were exactly the opposite of each other...SMH


The first was several years ago while I was going through the process of finding staff. The goal was to hire a caregiver that could be there to teach Jack that he can go to more than just me for help. To let him know he has a larger circle of support. I was looking for someone that could spend time with him after school until almost bedtime and help him go through his routine. And I was confronted by the fear of losing my connection to Jack by NOT being the person providing that to him.


I was surprised to find those feelings there. And shocked at how strong they were. I know how important it is to regularly engage with Jack in order to keep a strong connection with him and that can't just be done by calling him on the phone and asking how things are.


I was terrified.


An image of me and my son to symbolize the powerful connection that happens between parents and caregivers with children on with autism

I did a lot of work to manage that fear and I'm still working on it.


The other moment was the middle of last year. There were a lot of changes in the home last year and I was getting dinner ready, for just Jack and I. I was stuck by the thought of him being lonely and isolated.


Maybe a projection but I spend a lot of time alone. I work from home and stay in a lot because much of what I would do with my time off Jack wouldn't want or be able to participate in. If I'm not out Jack's not out. So we are home often.


That isn't what I want for him at all. As much as connection is challenging for him he enjoys being out and doing things. And I have found that he doesn't actually enjoy being home by himself. Even if I'm headed some place and he decides to sit in the car instead of coming inside with me he would rather do that then stay home alone.


That moment didn't bring fear but it did bring some sadness and it reminded me that I would need to be intentional with setting up his environment as he got older and potentially moved out of the house.


What does all this mean? Well if you have a child with autism or any social struggles here's what's worked for us:


  • Observe your child very closely and do your best to use the ABC method to determine need.

  • Use any means necessary to teach your child about connection and relationship (books, social stories, pointing out examples in live, role playing, have them make a video...whatever works man).

  • Advocate for your child by telling others what works and what doesn't as simply as you can.

  • Arm your child with tools so communication is easier for everyone.

  • Set up your child's day so they have regular engagement with people that are safe and supportive.


But like everything that I find that this applies to everyone when thinking about social connection, it's importance and how to ensure it is what you need. I find these ideas especially important as a parent of any child.


Here are some of the biggest take a ways for me:


Respect individual differences - this includes everything from how a person likes to connect to autonomy in being able to choose who to connect with. You can't force connection, you just can't.


Learn how to talk - the truth is many of us just weren't told what it meant to hold space or have empathy for someone so we do a piss poor job of it. It's not intentional but it does matter. Check yourself, remember you don't know everything and go get some skills man - seriously.


Observe what is really going on - we can often get so caught up in what someone is saying that we forget to verify with behavior. And not just others but yourself. This is important for personal integrity. Take the time to just watch, yourself, others and see what you can learn without words.


Be willing to try - real belonging comes from being safe to be vulnerable (thank you Brené). This means open, honest, transparent communication. It also means listening to the message you receive even if you don't want to hear it. You also need to be willing to meet others where they are, even if it's not something you are comfortable with.


I'm no longer amazed at how much looking at my son's journey with autism provides practical advice for all of us. Diagnosis not needed. It reminds me that in the end, basic principles are where life transforms. It's how we get to the next level. Whatever that level means for you.


What about you? Do you have stories that exemplify a basic principle in relationship and connection? What have you learned in your life that has served you well? What has been a disaster? LOL


I hope you will share a bit with me on how you have managed this area of your life. It's all about living and growing together. Leave a comment below.


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