Please allow me to introduce you to Alex. Not only does his son have an Aspergers Diagnosis, but he does as well (which pretty much makes him an expert all around as far as I’m concerned!).
I have had the pleasure of getting to know Alex and his family over the past months, and have greatly benefited from his unique perspective. I knew you would as well, so I practically begged him to write this post. (Plus, I thought it was high time we gave the dads a chance to speak up!)
His words, not mine – We are wonderfully made and woven together by a master craftsman. All of us. Aspie and neuro-typical alike. For those of us with difficulties accessing the world around us, it doesn’t mean we are wrong, or broken.
Read on for more Parenting with Asperger Syndrome: A Dad’s Perspective.
I’m one of those guys who likes my ducks in a nice tidy row, yet my family consists of some rather fast moving ducks. Two ducklings, 12 and 16 and Mother Duck. Over the years, Mother Duck has helped me gain a degree of patience and understanding of how much of a row these ducks need to be in, and whether they even need to stay still.
My family is a weird mix of Asperger Syndrome, dyslexia and undiagnosed ADD. I was diagnosed with AS in my late 30s which sounds better than saying “when I was nearly 40”. My oldest son had been diagnosed a good few years before, and through that experience we could see some of the same quirks showing up in myself.
I’ve been following and occasionally commenting at Not The Former Things for a while now. Shawna has kindly asked me to write a little form my perspective as a dad in a family which also has special needs as a main ingredient. This is going to be written through the lens of Asperger Syndrome because that’s all I’ve got. There is so much to say, I hardly to know where to begin. If you can imagine trying to mould a half inflated party balloon into a cube with your hands; it’s like that in my head right now.
The relationship of an AS father relating to his AS son has it’s own unique mix of both challenges and blessings. We speak directly to each other, sometimes too directly. We explode quickly, and we calm down quickly. We are comforted by stability and routine.
Shared special interests with the boys gives common meeting ground. With the older duckling it is computing and with the younger duckling there is a passion for music. Within these two special interest areas I can connect easily with the boys but trying to find a connection outside of these areas is difficult. There is much more to their lives that computing or music and this is where I draw on Mother Duck’s support
Family and parenting is all about relationship, social interaction and emotion. Coping with this can be a real challenge. This eye-opening article challenges the notion that folks on the autistic spectrum are devoid of empathy. It goes on to suggest that many of those on the spectrum are more empathic than most, leading to us being easily emotionally loaded which leads in turn to a classic melt-down or withdrawal.
One of the hardest things about AS is dealing with change, and when you have kids, change is all you’ve got. From the moment they are arrive, they are wanting to grow into their own person, continually challenging the established structures of the family in the process. For myself, this really can be the most difficult thing in the world.
Now that the teenage years have arrived, the structures which have been in place for 15 years or so are now starting to bend and break. The immediate reaction is to apply extra pressure to keep everything in place and from moving out of line. This isn’t so much from panic, although that is a component, but more just a deep sense of “But it goes like this…”. In my rational mind I know things need to change, but how to make this change?
Let me paint a picture of how change can feel for someone like myself. Imagine a train on it’s tracks. It needs to move to another set of tracks. For most people, they can pull a mental lever, the points shift smoothly and the train rolls along towards it’s new destination. Another change of plan? Easy, pull another lever. For myself there are no levers or points, only many parallel tracks. To move the train to another set of tracks requires me to lift the whole train by thought power alone and carry it across to the appropriate set of tracks. I then need to ever so gently lower it down, making sure that all the wheels are perfectly aligned and that none of the couplings have come undone. Can you feel how difficult and tiring that is? Another change of plan? Ain’t gonna happen easily. 😉
The importance of diagnosis
Before his AS diagnosis, my oldest son was at school where they were talking about friends. He was around 5 or 6 years old but already had classroom assistant assigned to him to help out. During the discussion he suddenly volunteered the information: “I don’t know much about friends, but I know about trains.” Very near broke our hearts.
For us, this was the beginning of our walk with Asperger Syndrome. When the provisional diagnosis of “Pervasive Development Disorder / Not otherwise specified” was refined to “Asperger Syndrome” there was for us, as with many others, the sudden jolting moment of realization – okay, now what? Shawna has written eloquently about this process as well.
Since we now know that we share similar brain-wiring it’s easier, I think, for him to take guidance from me. Also, having a few more years under my belt, and having this understanding has actually been a real help in meetings with school. It means I have been able to really advocate for him at crucial points during his eduction.
The key thing for us has been the accurate diagnosis and appropriate support from schools and doctors. A decade later this young man is now preparing to choose which route to take for higher education, and he’s going to be just fine.
Plans for the future?
Like Shawna, I follow Christ as best as I can and a couple of bits from the bible have been floating around me head. Let me share them here.
For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.
The theology of disability is huge topic, but I hold that we are all children of God. Although the AS brain wiring can be a real pain sometimes, it also brings many benefits. Our family gets it’s car and computers kept in good repair, and there is often live music somewhere in the house. We are wonderfully made and woven together by a master craftsman. All of us. Aspie and neuro-typical alike. For those of us with difficulties accessing the world around us, it doesn’t mean we are wrong, or broken.
For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.
Everything’s going to be okay.
Alex describes himself on Twitter as a Christ follower, husband, dad, geek, Mr Fix-it and axe-wielding maniac, in that order. In reality, these attributes seem to jump around a lot more than he would like.
alexmetcalfe.blogsite.org / firstname.lastname@example.org