Lately, I've been reading blogs authored by adults on the spectrum. I have fought against doing this for a long time. To be frank, part of me doesn't believe I can learn anything from a person who made it to adulthood without a diagnosis. We don't make it through a day here without autism ruling the roost, let alone 20, 30, 50 years.
But, I am trying to remind myself that things were different "back in the day". That their lack of a diagnosis in childhood doesn't mean they weren't autistic. They just lived in a time where doctors knew too little, and help was non-existent. Where parents were told their children might be schizophrenic, or bi-polar. Or shy, introverted, weird.
Even if these adults aren't exactly like K, they deal with a lot of the same issues. As she approaches her 9th birthday, and as things are really starting to bottom out, I find myself wanting to know anything about what the future might hold.
And, honestly, if K is more severe than these adults...I'm scared to death.
These are people who got through college. Living away at dorms, even. But, who still have an immense amount of difficulty in daily life. Whose autism gets worse as they get older. I can't imagine K ever living in a dorm. At least, not right now. And if things only get worse with age...
One thing I read really struck me. A woman wrote on her blog that, although people never really knew of her issues when she was a teen, throughout her whole high school career, she just wanted to die. Every night she went to bed, hoping not to see morning.
For her, "faking it" took it's toll. Now, as an adult, she can no longer fake it at all. She needs a lot of help just to make it through her day. She cannot work, drive. Her college degree goes unused. She's had multiple hospitalizations due to suicidal thoughts, and unbearable anxiety. And, while most adults on the spectrum write of neurodiversity, and the ways in which their autism makes them better, she is honest about how her life would be better if autism didn't play a part.
We have such huge issues now, and have for years, I can't imagine what the future holds. Or, rather, I don't want to imagine. I am completely fine with K living with us forever. I will accept whatever she chooses to do or not do. What I cannot accept is her ever wanting to die because of expectations we, or anyone else, set for her.
I never want her to feel that she has to be "normal". That, no matter the cost, passing is the goal. Those who have followed me for a while know that I just want her to be happy.
I have feared for a long time that I could end up with a teenager who feels so lost, so depressed, that...well...I can't even put it down in words. Her self-esteem is already so low, I can't fathom it getting lower. Add in puberty and hormones, and it's like the perfect storm.
I really just feel frozen. I am so unsure as to what my next step(s) should be, and I don't want to make the wrong choice. Do the wrong thing. Make my daughter feel like some of these bloggers...who think life isn't worth living because of their autism.
In a way, reading these blogs is probably like Googling a headache, and deciding you have a brain tumor. Autism is a complex thing, and it isn't going to affect everyone the same. I should remember that a lot of these adults didn't receive any help as children, and maybe that's why they struggle so much now. That K's road might be different because we have fought for her, and we want to understand her needs, and give her the best life possible. Not a life we have planned out, but a life that will make her happy.
K turns 9 next month, and birthdays are sometimes more worrisome than they are joyful. We have so much going on right now, I wish I could just stop time, catch my breath, and figure things out.
But, alas. Time stops for no man (Or woman. Or child). Awareness on my part is key, and I hope K lives a fabulous life, where she looks forward to every new morning. If I have learned one thing from these adults on the spectrum, it's to accept and love my children as they are. To be understanding. To focus on their gifts, and not their deficits. To make others do the same.
For that, I am grateful.