Autism|Grandparent|This happened to me
Letter to a Newly Diagnosed Autism Parent
Real-life advice for after the overwhelm.
Dear Parent,
I have a heart full of empathy for how overwhelmed you feel by your child’s autism diagnosis. That frenzy to find out, to relieve the anguish. I can’t honestly offer any permanent solutions or immediately soothing words because there are none, but I can say with certainty, a brighter future is possible. Here is how I know that.
As a fully involved grandmother to teenage twins with high functioning autism, I have seen the worst and the best. I have given my all to support, and to see the lighter side of life with autism, where possible.
Things I never thought I’d say, but I have. This is just a random sample of some things I’ve been compelled to say over the last fourteen and a half years. They didn’t seem at all humorous at the time, but now we laugh.
Put it away. I don’t want to see THAT! Don’t run around outside in your undies. OMG, you’ll frighten the neighbours. Can you please go to the bathroom if you’re going to do that. That noise is just TOO loud. Please don’t use your hands to eat pasta. Yes, you do have to put clothes on to come to my house. Stop playing with it. Wow, now I’ll have to apologise to the neighbours.
My husband, Mr.M., had a drill he did with the twins whenever he took them out. He’d line them up and say:
Repeat after me: I will NOT act like a dick, or we will have to come home.
And it usually worked.
Living with the alphabet. Identical twin teenage boys, even without High Functioning Autism, can be a handful. Our boys have an alphabet of tags to deal with, on top of the Autism. ADHD-with Impulsivity, Sensory issues, ODD, Anxiety, and learning difficulties.
After everything I’ve seen over the years, like their mum, I know when they are responding to their neuro-diverse brain patterns and when they are just being teenage idiots. Unfortunately, not everyone they meet in life can make that distinction.
The label argument. Some will say they don’t agree with labels, but in our family, the labels have been a blessing. You can’t mitigate problems unless you know what they are. Unless you fully understand them.
Diagnoses, labels, whatever you choose to call them, give you a roadmap to follow, and the more information you have the easier it is to interpret the way forward.
The problem problem. Some will say autism isn’t a problem, but they forget that every person with autism lives a different experience from others with autism. More often than not, it can bring with it a range of comorbid factors, further complicating the lives of people with autism. No-one can deny that complex brain and behavioural issues become a problem in navigating everyday life.
I know the difficulties my grandsons have faced, and they are raw and painful. Living their lives, living our lives, has been, at times extremely traumatic.
We have had police and paramedics at the door on several occasions. We have battled with school authorities. All the adults have been sworn at, threatened, punched in the head, spat on and wrestled to the ground. The boys have been bullied, and have behaved recklessly. All of that has been problematic, but we have continued to love unconditionally, when sometimes, that was the only solution we had.
Patience and fortitude reap rewards. We waited for all the years of work put into our boys to bear fruit. There is not one therapy, technique or program that hasn’t been tried. We could form a small army of every psychiatrist, counsellor or physical therapist the boys have seen.
We have also fended off ignorance, well-meaning fools who think it possible to beat, abuse or pray the autism out of a person. And then there were the deniers, the ones that looked us in the eye and said; “Yes, but they don’t look autistic.” They are not around much anymore.
We rode the wave of early puberty hormones and survived. There is a light at the end of all this, and I think we have spotted it.
Sunshine after the long, long storm. Finally, a burgeoning degree of maturity and personal insight has arrived. At nearly fifteen, the boys are doing okay in High School, hoping to get part-time jobs, and excelling at sport. Occasionally they have detentions or suspension, usually triggered equally by poor management and poor impulse control.
On the whole, we have two well-functioning human beings who are beginning to understand how their cognition differs from others’, and how that difference influences their relationships. Best of all, they are learning to take responsibility for their own behaviour, and figuring out how to appropriately express a full range of emotions.
I fully believe that they have gained these insights by being part of a very strong and fully cooperating village. Consistency, impeccable role-modelling, intelligence and compassion have paved the path for a much brighter outcome than ever imagined.
The take-aways:
Figure out what you need to do, choose what you feel is a good path for your child, and stick with it.
Do not let anyone question any decisions you make. You will be your child’s strongest advocate, and that takes fortitude and persistence.
Ask for help. Don’t try to do it alone. Enlist people who will do what you ask of them, and only those who will support and encourage you.
Look to the future with optimism, but remember, like all children, yours will be a teenager with autism one day. That brings its own unique challenges to solve and survive, and you will.
Lastly,
I have faith in you, please have faith in yourself.
For more inspirational discussion about autism try this gem by Scot Butwell