Another Autism Spectrum Awareness Day is coming up on April 2 to remind me that we have been keeping a secret from you. High masking autism spectrum disorder in adults can not be seen or even observed by someone who doesn’t know it. It still exists for people on the spectrum, affecting every area of their lives.
What is autism spectrum disorder?
Autism spectrum disorder (ASD) is a developmental disability that is caused by differences in the brain. It can lead to deficits in social skills, emotional literacy, executive function, and mind blindness – which is difficulty in understanding one’s own and others’ mental states. People with ASD may also experience anxiety and depression.
Autism is a complex condition, and every person with Autism Spectrum Disorder (ASD) is unique. The spectrum ranges from high masking individuals to those with severe impairments. As Stephen Shore said, “If you’ve met one individual with autism, you’ve met one individual with autism.” Adults on the autism spectrum have been living in a world that is vastly different from theirs for many years, and they deserve recognition for their strength and courage. They have learned to mask their condition to fit in with others, but their inner struggles often remain hidden.
Our story
Jakob and I have known each other since grade 7. We were part of the same teen group, and our relationship grew from friendship to love and marriage.
Before we started our daily life together, I did not see or suspect anything different in him compared to myself. We were both quiet, reclusive individuals (or so I thought).
Soon after our marriage, though, I noticed something about Jakob I had not seen before. I had not met anyone before who saw life the way he did. He was also not shy, as I had known him for years; there was something about him that I could not even comprehend.
When our children joined our family, they were just like their dad; with that, I did not think much about it. When our daughter started to speak and show her personality, it helped me to understand my husband better. She did not mask yet and would plainly say what she thought.
I did not even consider it a disorder. I was daily surrounded by very intelligent, straightforward, strong-willed people. We learned to live with each other, and things seemed okay if there weren’t a whole other world outside our home that thought and felt like me. Right alongside my family, I learned to mask, sandwiched between them and the outside world. My family has challenged me beyond what I thought possible in so many ways.
One day, I was randomly watching YouTube videos, and a channel I followed for recipes had a video about her boyfriend’s high-functioning autism. Had the video been on another channel, I would not have watched it. Autism was not on my radar. What I heard from this couple blew my mind. For the first time, I heard someone else talking about what was common in our family.
I did more research, and I found exactly what we had experienced. Could it be that my beloved family members were on the autism spectrum?
We did some Online tests and got a diagnosis. We finally had a name for our situation, and we were not alone. Estimates indicate that at least 5 million adults in the United States are on the autism spectrum. The hidden number worldwide is much greater. No one knows how many families live as we have lived for so many years.
When we first found out about High Masking Autism Spectrum Disorder in Adults, I thought I would go public right away. Knowing what autism is has changed our lives so drastically that not sharing seemed rude. Looking back at our family’s experience, the most challenging parts were not knowing what was happening and trying to fit into society.
Eventually, step by step, we created a simpler life at a much slower pace for ourselves. Now you know why we like a simple life so much.
Keeping it secret
Alongside learning more about autism, I also learned that there is little to no tolerance for being different than everybody else. If someone is not fitting the norm, we call it a disorder that has to be fixed.
After over 30 years of marriage to a person on a spectrum and raising two children on the spectrum, I would not agree that high-functioning autism can or needs to be fixed.
People with autism are different, and there is no question about that. They are lovingly sometimes called coming from another planet. This thought is not that much off. But we do not know either what causes autism or why it is more and more common.
People on the autism spectrum have brought us many of the conveniences that we enjoy. Here are 20 famous people on the spectrum.
As a homestead and blog, I also know that Northern Homestead would not be what it is if we were not on the spectrum. The geodesic dome greenhouse we built before there was much information on it, and the alternative heating and cooling, alongside many other things, were all brought into being by a very focused man on the spectrum. So, finally, we are taking the courage to share our secret with the world, and we are sure there are people out there who will be very grateful we do.
It’s time for change
I want to raise awareness by sharing this article about people who are different, such as those with autism, ADHD, or other neurodivergences. There is nothing inherently wrong with any of us; we need to learn to accept each other as we are.
Integration is much more valuable than separation. Equality does not mean sameness. We are all different, and each one contributes to the whole. It is arrogant to believe that only neurotypicals are normal and everyone else has to comply with our norms.
The number of children that are born with autism is rising. We can disqualify them all as disabled in a world that IS very challenging for autistic people. Or we can start listening more and change to make it a better place for everyone.
I will leave it at this and would love to hear your questions.
Would you like us to share more practical content related to neurodiversity?
How many of our readers are impacted by neurodiversity?
Or maybe you are hearing about high-functioning autism in adults for the first time?
Let us know your thoughts, and remember – let’s be kind to each other.
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Thank you for having the courage to write this article. I know it is not easy to be this honest with the world as you don’t always know how people will react. I very much enjoy your blog and now I will enjoy it even more because I can really relate to some of the challenges you mention above. Best wishes to you and your family.
Thank you, Susan, for your kind words, it is greatly appreciated.
Thank you, Anna. You and your family’s homestead have been an inspiration to me. Now you have become even more so! There are 8 billion unique individuals in the world, each of us are somewhere on the spectrum, in my opinion. It is a coincidence that I just started watching Extraordinary Attorney Woo about a Korean attorney who is on the spectrum; the actress who plays Attorney Woo is also. It’s time that we started this discussion and I applaud you for joining it.
“There are 8 billion unique individuals in the world, each of us are somewhere on the spectrum” – love that!
My 2 children are on the spectrum. Thank you for sharing!
Sending much love to your family. Go with the flow, not against it, it will carry you <3
Such a good blog post! We have a grandchild who is severely autistic, and a few more who are on the spectrum. The more I learn the more I suspect that some of our adult children are on the spectrum. From the online screening tests, I am, too.
Just wondering – how does an adult in Alberta get tested? any insights you can offer would be appreciated.
I’ve been following your blog for a very long time. I rely on it for valid info about growing food in Zone 3 Alberta. We live in a challenging climate, and you take the confusion out of how to grow food here. Thank you!
That’s a good question, Judith and I wish I had a solid answer. Our son in Calgary also struggles with depression (a common combination) and he went with his doctor. My husband is self-diagnosed. Asking your doctor for an official diagnosis is a good start, I don’t have more information yet. Maybe someone will comment with more details.
This is also why we live on an acreage out in the middle of a farmer’s field (no lights, noise), and why we live a simple life (reduce stress and personal demands, keep routines . . . ), and why we grow most of what we eat (know your food). I have a diploma in inclusive education and, as a resource teacher, I worked with many children on the Autism spectrum. That’s when I realized that I also lived with adults on the Autism spectrum. This realization explained so many things that I was struggling to understand. Thank you for sharing this very personal part of your life. Praise God that you found your way to a place of understanding and joy. There’s no denying that this life comes with challenges, but I pray for anyone who is struggling that they can also find their way through.
Thank you, Heather, it sounds like you know exactly what I’m talking about. No denial, but acceptance. Thank you for sharing your way to live with neurodiversity!
Dear Anna, thank you for sharing your family story on autism. As I suspect a grown up family member to be on the spectrum, too, I wonder how to adress the subject without deterring him. Kind regards Susanne
That’s a good question. Here is what I did. I found some videos from people on the autism spectrum, and there are lots the link is just an example, that I thought would be helpful, and we watched them together. Autistic people usually recognize each other. Doing the online test (the link is above in the article) can be another option. In my experience, you want to make them want to find out. To enforce something upon an autistic person is usually not beneficial.
I casually mentioned one day that I thought my adults had autism. I said, “I did this test at school, and I think you have autism. Why don’t you do it on yourself and see if you think it’s true?” Using an objective, third party, research-based test generally appeals to a person with autism. Facts are less confusing than someone’s feelings. Also, two books that helped me (as the neurotypical partner) were David Finch’s The Journal of Best Practices . . . and Tony Attwood’s The Complete Guide to Asperger’s Syndrome (Asperger’s and Autism used to be diagnosed as separate categories. They’ve since been put under the one umbrella of Autism). Attwood’s book might be a bit heavy for some, but I found it helpful.
Thank you, Heather, for sharing the book recommendations.
Thank you for sharing your courageous story. I believe that people with Neurodiversity are very special. We should try to understand and include without preconceived impressions.. My grandson is on the spectrum and he has taught me so much by looking at the world through his eyes. We were very fortunate to have a diagnosis at 18 months. He has had very understanding ABA therapists who have helped him live a quality of life that everyone deserves. As an exhausted Grama who helped along the way with his mom, I salute the strength, and courage you have had and still have. Thank you for sharing, and by the way……I look forward to your amazing articles for those of us who chose to live in colder climates. Looking forward to more gardening this year!
Thank you Corinne for your kind words. Yes, more gardening is coming. I’m starting a new blog for those more personal things in our life to keep NorthernHomestead as a gardening and homesteading blog. Thank you for following along.