[Guest Blog] Living in an autism bubble in an ever-changing world.

Published Sep 30 2021 10:21 AM 2,313 Views

This post was written by Office Apps & Services MVP Peter Rising as a part of our Humans of IT Guest blogger series. This is a follow up from Peter's first post in November 2020 about the challenges of working from home during Covid-19 times whilst raising a son with severe autism.  Almost one year on, life remains extremely challenging, but in different ways. 

 

In early 2020, the world changed as the global pandemic disrupted all our lives. In the months that followed, many of us adjusted to working from home, and supporting our children with home learning. This was a massive shock to the system, but what I did not realise at the time was that this would be the easy part for me and my family.

As a quick recap, I live in the UK with my wife Louise, and our two sons George (14), and Oliver (11). Oliver was diagnosed with severe autism at the age of two and a half, and as he has grown older we have seen sensory processing disorder, extreme anxiety and pathological demand avoidance added to the list of challenges he faces on a daily basis.

 

Screenshot 2021-09-12 at 20.29.17.png

Oliver and me

Before the pandemic devastated the world, Oliver attended a Specialist Educational Needs (SEN) school, and was picked up and returned home each day by the school bus. I don't believe he ever really enjoyed attending school though, as even back then we had some difficulties in that he refused all food during the school day and would also not visit the school toilets. Looking back at those times, I think that Oliver merely 'tolerated' school, but it is clear that having to attend caused him distress.

This became ever more apparent when schools started to re-open again in late 2020 and children started to return. To begin with, we were quite hopeful, as Oliver boarded the school bus on the first day back with no real problems. Things began to change very rapidly though and Oliver started refusing to get on the bus and the more we tried to encourage him, the more distressed he would become.

So we tried driving Oliver to school instead. This looked like it may work until we took him into the school building and he refused to go with the teacher, so we ended up taking him back home with us. Slowly but surely, the mere mention of school made Oliver more anxious. What didn't help matters was that on the few occasions we succeeded in getting him to attend, the pattern was disrupted when a teacher or classmate inevitably tested positive for Covid-19, resulting in the entire class needing to stay at home and self-isolate for 14 days. Routine and pattern is essential in Oliver's life, and this unpredictability did not help our cause one bit.

By the time 2020 came to a close, I think Oliver may have attended school for approximately 10 days in total since it reopened before we got to the point that he stopped attending completely. At this time, both the education and social authorities agreed with us that there was little point in persisting with trying to get Oliver to attend school whilst the requirement to self isolate was still in place as it meant that consistency was almost impossible.

As we started the new year of 2021, we became accustomed to Oliver staying at home. This was arguably hardest on our oldest son George who was now the only person leaving the house on a regular basis to attend school. I was still working exclusively from home myself. George, to his credit has shown incredible maturity beyond his 14 years throughout these difficult times - particularly as Oliver staying away from school has led to many other stresses and anxieties in our house.

 

For many months earlier in the year, we established a pattern of Oliver visiting Louise's parents who live very close to us. He only went for a short time each day between 3.00pm and 6.00pm but this was extremely helpful to us as it provided us (Louise especially) with some respite. Oliver has become particularly attached to his Mother over the past year - almost to the point of obsession, and he always likes to know where she is.

This extreme attachment to Louise has only been exacerbated by two escalating anxiety triggers which Oliver has developed during this time. The first trigger is barking dogs. There are a lot of dogs living on our street and when they bark (which is frequent), Oliver becomes hugely distressed and will scream. If the barking does not subside quickly, Oliver will run through the house to find Louise and will start hitting her repeatedly. This is utterly horrifying as you can imagine. It contradicts entirely his special bond with Louise, but illustrates that he does not understand how to appropriately process and express his emotions. This behaviour is still a problem as I write this.

The second trigger is bad weather. Oliver seems to sense bad weather before it happens. He will appear in the living room and demand that the curtains are closed and the lights turned on (regardless of the time of day). we then have to play calming music at high volume. This can go on for quite some time, even if the weather has improved. It will only end on Oliver's terms. Ironically, the bad whether stops the barking dogs issue, but when the sunshine returns, the dogs come out again. It feels like we just can't catch a break.

To add to the problems, back in July Oliver stopped going to his grandparents. We have no idea why but now we are effectively housebound. Oliver becomes distressed if Louise tries to leave the house for any reason. I am not so restricted but the only time I really go anywhere is to take George to school as I don't want Louise to be left alone with Oliver for any length of time.

When you write all of this down and read it back, it sounds ridiculous and unbelievable, and you do start to question if you have been good enough parents. Fortunately we did receive some validation recently as child mental health services and a clinical nurse started visiting Oliver every day recently. They were confident that they could challenge Oliver's rigidity, but they too have found that Oliver is not going to be an easy code to crack.  They attempted to get him to attend his new school last week, and on the first day they managed to get him there for a few hours.  He clearly did not realise where he was going though, as the following day when they attempted this again he refused their attempts to get him ready and into the car.

Despite all this, we still manage to get things done. I manage to do my work, have teams meetings, record a podcast, and write blogs like this one. Louise manages to enjoy her crafting which includes knitting and crochet, and she has recently rediscovered a passion for water colour painting. These activities are often interrupted of course and things take a lot longer than they normally would as a result. In the extreme, I have had to abandon an important work call to respond to a violent episode from Oliver when a dog barks.

I have to be honest and say that I never imagined that life could be this hard, and I don't know how on earth we are going to work our way out of this situation. The services that are working with us to support us and trying to de-sensitise Oliver to his anxieties are now regrouping and thinking of new strategies, but it feels like while the rest of the world has started to do normal everyday things again, we have never actually come out of lockdown.

We remain upbeat though throughout it all, and our families always kindly remark how incredible it is that we still have a smile on our faces considering the stressful life we live. That gives me so much strength, especially on the days where I'm running on empty and feel like I have nothing more to give.

I have to keep the faith that there is an answer to this situation, and the support and friendship I receive from this community helps me stay strong more than you can know.

Thanks for reading, I hope I can update you in the not too distant future with some good progress. Keep your fingers crossed for us!!

Take care and stay safe!
Peter

9 Comments
New Contributor

Peter,

This is an amazing story and my blessings go to you, your wife, and boys.  I now have a 20 year old with autism.  He does not sound as severe as your son, but when he was younger, it was a challenge.  I always share a time that we were in the supermarket and he decided that he wanted a container of rice.  He doesn't eat rice, so we told him no.  He grabbed the rice and threw himself on the floor having a fit.  He was 9 or 10 at the time and about 5 feet tall, so you can imagine how that looked to other shoppers.  I have two other children as well, my daughter is two years younger, but has always been mature beyond her years (like your George),and more like a big sister to her older brother.  She has stuck up for him at school and in public, and has always been willing to allow him to get his way when it came to choices....such as what movie we had to watch or dinner we had to have.  My other son is much younger than my other two, currently almost 12.  He did not witness this side of my older son.  Currently, my 20 year old is in an adult program helping to guide him to adult life.  He is well adapted and much more self sufficient than he used to be.  He is also much more flexible to things not being what he wants them to be.  I have talked to other parents from my son's inclusive baseball league, and the lock-down and changes have been very challenging for many of these great kids to find their way out of.  My advise is to stick with it and keep doing what you are doing.  You are great parents and Oliver and George are lucky to have you.

Wow, thank you so much for your kind and lovely words Dwayne.  Your story sure has some familiar elements to it and it also gives me a lot of hope.  Oliver can change almost in the blink of an eye so I never rule anything in or out for his future.  Toughest time of our lives right now but I do believe things will turn out OK.

Senior Member

@PeterRising Thank you for sharing your very personal story. The ongoing disruption to familiar schedules and support services with the pandemic has been extremely rough on the autistic population and their families. I wish you luck and swift progress in finding the appropriate therapy and support services for Oliver and the rest of the family. You are not alone! (Half-brother severe ASD; daughter high functioning ASD)

 

Microsoft

Peter,

It was remarkable to read your story, and as promised, I would like to share my own situation as well. Which, to already start with the first challenge in all this over the last couple of years, is often different from how my wife experiences the situation, as well as the daughter herself. 

Kitana has quickly been identified as a "smart kid" at young age; she could read, write faster than "other kids". On the other hand, she hated any physical exercise, didn’t make a lot of friends,… We were like, sure, she’s a kid, and not making a big deal out of it. When she moved to 3rd grade at age 7, she passed a skills test with better score than kids taking the same test at the end of 3rd grade; that's where she got the stamp of being gifted, after going through a full screening. The principal and head teachers decided to have her skipping 3rd grade and move up to 4th in the first week of school year starting. At first, this helped keeping her happy, as she was finally learning new stuff, and successfully moved to 5th grade. Only 3 months in, we again got feedback she was learning too fast, asking for more content, harder tasks to work on... so the school decided to have her switch to a Freinet-type of education, which allowed Kitana to learn stuff at her own pace. That's how she finished the rest of 5th and 6th grade in just a few months. So once more skipping a grade basically.

That was also around the time where she started being "different". A situation that family and friends described as she’s annoying, a pain-in-the-ass kid, and we as parents were "tolerating" her attitude, which was not-one. And honestly, I often thought the same, causing arguments with the wife and Kitana myself. We started blaming school for this - because they were the ones moving her up 2 grades, etc - not knowing that she was a kid with autism yet. It was also the early days of my heavily traveling for business (eventually 90% of my time, globally), being away all week, sometimes several weeks back-to-back. The short weekends I was home, was literally no fun, as we had constant fights, arguments,... on anything. She didn’t want to go in the shower -> fight. She didn’t want to put dirty laundry away -> fight. She didn’t want to go to a restaurant, to a mall, to basically anywhere I only even suggested to go -> fight. After facing this for several months, we decided to reach out for help with psychologists, where she could talk about her gifted situation, the fact she skipped 2 grades etc... as well as how she experienced the fact I was traveling all the time. As I was blaming it more and more on myself.

Only a few weeks in, her psychologist identified several characteristics of Kitana being on the spectrum as she explained it. After going through an official testing, interviewing and screening process, she got the stamp of sever autism but high-functioning (what ever that meant?). I wouldn't say it helped a lot at that time, as it took me personally still several more years to really understand (and still…), but at least we got an "explanation" for how she was acting, doing and behaving. For example: reason we had arguments during my being-home-time, was because I didn't understand her way of thinking. Promises are promises, and you don't pull back (oh sorry Kitana, we are not going yet because I need to finish something...), which for her didn't fit in her autistic thinking. Or when we would go to a mall, a restaurant or any place, that she didn't like for any given reason, was actually because of a lot of good reasons: Could be the noise, the smells, the lighting, the staff,... or even the food on the menu. We just didn’t know. So I was looking forward to spend time with the family during a nice dinner, where from the start she didn't want to be there. Which put her in a bad mood and attitude, to which I reacted negative as well, and basically blowing up the whole "nice dinner" experience. But once we learned about her autism, all those fights started to make much more sense.

Another big frustration I personally had because I didn’t understand it for a long time, was her  passion for art supplies, and when I say passion, I mean she collects anything. Pencils, notebooks, crayons, wool, cross-stitch,... and every place we went, whether in Belgium or during international trips with the family, guaranteed we had to go and visit an art supply store. Where I blamed her for just building out her collection “just because, with no other reason”. For her, it was an important part of the trip itself. It took me years to accept her thinking.

Only so many years after, we figured out it could have been a lot “easier” if she would just explain things better, how she feels, why she thinks or acts in such a way,… but she can’t. There is so much frustration inside, and it’s hardly coming out. And when it does, it’s a little bomb going off. Where we need to try and calm her down, listen, asking for more details (which typically didn’t help right after the explosion, but mom pushed through and typically got an explanation several hours or days after)

Continuing on the school situation… in 3rd grade of secondary school (I think UK and US call this 8-9th grade??), she couldn’t fit in the regular school system anymore, so we had her switch to being home schooled, and taking official exams at the ministry of education. Self-studying the traditional curriculum and taking written and oral exams. This worked fine at first, as she could study at her own pace, schedule the exam and pass it. She was mixing all exams from 3-4 and 5-6 grade; after doing this for about 18 months, she was told she actually didn’t need to take all exams, if she would pass the ones from 5-6th. This is where she got another hit! And not being able to process it. After more than 2 years of seeing improvements, she went back to her dark self, locking up herself, not sharing anything with me (luckily still more with her mom). Everything around home schooling already had a bad connotation (no real guidance on what to study, no material provided, taking a train to the capital which was an awful experience it itself every couple of weeks, getting no understanding for her autism situation by proctors (e.g. when doing an oral test, she’s looking down at her shoes, and got yelled at for that several times by the proctors, ending up in bad grades – which on top of all else, was once more putting down her self-esteem (because society stamps gifted and autistic people as smart, they have it so easy because they learn so fast and always get good grades, right??). So what should have been a help in the first place – studying at home and passing exams at her own (faster) pace, turned into a miserable situation for her, but also for us. The weeks before a scheduled exam were horrible, the trips to the exam center were horrible, the first hour after returning from an exam was typically screaming, crying, more screaming and crying,… This had to stop.

I didn’t detail on the broader family situation yet. I was never really close with my parents, but they were ok towards our daughters. But by explaining certain situations or details on Kitana’s behavior, made clear that they didn’t really understand – and I can’t blame them. Because if you are not in the middle of the situation we were in constantly, it is hard to understand. But on the other side, it’s your granddaughter, and you should at least try to except her as she is. This resulted in less visits, or when they happened, avoiding “difficult conversations”. On my wife’s side, the situation got really bad in a short period of time. Where my wife used to be very close with her mom and brothers (her dad passed away when she was 17), the bi-daily visits after school turned into a tirade of screaming (my wife, my mother-in-law, Kitana in any order, sometimes all together,… as the tension was extremely high during every visit. And the discussions and arguments typically went on longer when we were already back home. So my wife took the decision about 2,5 years ago to just break with her family, as their was no understanding at all for the situation. Kitana was a daughter from hell, a spoiled brad,… and that’s only the nice part of the conversations we typically faced when visiting).

So here we are spring 2021, April-May timeframe. With only a few exams to take left, she started looking for studying at universities, preferably in the UK, as she had a huge interest for English literature (and fluent in English overall), history and philosophy. Which she really, really, really wanted to do. The stress for passing those last few exams in that horrible home schooled scenario was not helping, as she needed to pass those before she could even apply for university. So another break-down in her autistic thinking… 

We’ve been exploring other ways of education for the last 18 months, and not finding any workable scenario. Until that one weekend where – by coincidence – we found a college in the UK that provided a transfer program for international students, preparing them for UK university studies later on. But how would that work? Is she going to live by herself at age 16,5 and being autistic? Never going to a store in Belgium on her own, barely going outside (the world is dangerous, public transport and Uber-alike is scary, everybody is potentially infected with COVID – when we walk from our place to an off-site garage, we found out she was walking different, only to find out she tried to hold her breath as long as possible, to avoid any risk of inhaling – was another interesting fact to hear about after several weeks of seeing this – so there was no way she could function in this international student setup. We talked this through, and she was majorly convinced she would make it happen.

She left Belgium mid August, to go and study in the UK, staying at a guest family, where the guest mom has 2 autistic children herself, but already living elsewhere (there around 27/28 of age). For now, the school and teachers are trying to understand her eager to learn as much as possible, and supporting her in that. She’s been there for only a few weeks, but we can already see big differences coming up… she takes the train by herself, checking all her stuff several times, checking if she is on the right train multiple times (and yes, sometimes on the wrong one and panicking and freaking out while calling home…), she’s going to grocery stores to get food and snacks,… but all with the same rhythm, taking baby-steps, planning everything meticulously about how the trip will go, how long, where to walk and where not,… but she’s doing it, and we are very proud and encouraging her in all that. There are still meltdowns, anxiety, the super-structured way of living, but it’s going ok for now. Once she’s finding her way around the school life even more, we are confident she’ll do amazing things. She’s still on her own, not trying to make any friends, still wearing her headphones all day long. But she’s smiling again, which has been a couple of years. And that’s most important.

 

 

@petender wow, what a read and I'm in awe of what you have been through.  You and I must talk properly at some point soon.  Let's get a Teams call setup!!

Occasional Visitor

Hi Peter,  

Very sorry to hear how challenging it has been, it must be very tiring for you all.  

 

My partner has sensory processing condition (self-diagnosed autism, as came to realisation later in life + dysautonomia (which has exacerbated sensitivity levels considerably)), and many of our challenges overlap with the stories you are sharing about Oliver.    For the sake of feeling some sense of solidarity, specific things that you mentioned...

My partner is also predicting the weather (because she notices the micro-changes happening before the macro-changes happen .. i.e. all the birds get quiet, or the pressure changes slightly).   Our biggest challenge is handling the arrival of any packages, mail, workman at the front door as we have to explain every time the container of quiet and precision we are keeping for her health.

As I am also working from home, I have struggled to explain the same phenomenon you mentioned where I will suddenly have to leave a work meeting call, or why I am not available for a quick follow-up call on something (because all calls have to be planned as unplanned disturbance is really tough).   Having to be nearby in case she needs something, but not so far that I'm out of earshot.  

 

We live near a main road and trucks passing and making a noise can really be an issue.   I eat as quietly as I can in my work room, and I have to think ahead about the sound of the wrappers, packages, etc.  Nothing is taken for granted.  

 

What I felt a connection with personally in your post was the trying to explain the dynamics to friends and family members and the realities seeming so far apart, can feel really isolating.  I want to leave you with the reflection that we are living a very similar reality here, where every details really matters.   Some of the things aren't to be overcome but worked around, and we make small gains, but it can be very challenging.    We try to focus on the positives, and build on those.  

 

We will both be sending our very best to you and Oliver and your family, and hope that happiness and ease finds its way into as many hours of your days as it can.  

Best, Patrick

Patrick, thank you so much for taking the time to message me, especially as your own life certainly has similar stresses and triggers.  It's really difficult isn't it, being on a constant state of high alert - almost like living in a pressure cooker.

 

I hope you and your partner are getting help and support.  

 

Take care.

Peter

Thank you so much for sharing your story Peter. What a challenge it is for you and your family and it shows another often unnoticed impact of the recent change to this world.

Also to George, All the respect and love to George. As the sibling of someone with such challenges you are placed in a tough situation and I know that it is hard for you and also you should know that it is hard for your parents as well, knowing that because they have to give a significant amount of their attention to your brother, they are not able to give as much to you as they want to. You are forced, through no fault of your own to have to grow up faster than others and experience difficulties that others your age can have no capability to understand. Keep your chin up.

I am touched by your story Peter, once upon a time I worked with children and adults with Autism and severely challenging behaviour. I have seen the impact that this has on families as they struggle to deal with these unique situations that they find themselves in and reminded of the times that I spent helping families like yours.

I was talking with my wife (who also used to work in the same field) recently about how the virus would have this type of impact and how we felt for the parents who were experiencing it. We remembered the story of a young autistic boy who always went to school on the red bus number 17 and who sat with his mother or support assistant and talked through the journey, turning left here at the shop and right here at the garage etc. One day roadworks closed a road and the bus route was altered. He was never able to go to school again and it was indeed a challenge for us many years later to assist him to use a bus.

I wish you, Louise, George and Oliver the very best. Trust your instincts and trust your professionals and remember to laugh at the funny things.

Rob

Thank you so much Rob, I massively appreciate your kind words.  The story of the boy on the bus is so familiar.  The smallest change like that can result in an extreme change in behaviour for sure.

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