Before reading Keiko Tobe’s With the Light, our professor said that this is probably the most accurate portrayal of autism of all the texts we read. I kept that in mind while reading it. What this manga makes very clear is that having an autistic child isn’t this magical adventure like in films and other works of fiction. With the Light seems like non-fiction to me, even though it technically isn’t. It felt more like an educational guide on autism than an entertaining novel out to make money with gimmicky autistic characters (like some of the others we have read). This book shows how difficult it is having an autistic child and it had me curious about the experiences of real life parents, so I did some digging.
Recently, the father of an autistic boy went viral on Twitter after asking for help for his autistic son. His non-verbal, 14-year-old son will only drink out of the sippy cup he has had since he was a toddler. The original cup eventually became too old and trashed to use, so the parents have been replacing it with exact copies. However, the cup isn’t made anymore, so the father asked Twitter if anyone had the exact cup somewhere in their cupboards that he could buy from them. He got a lot of support, but he also got a lot of hate from people who didn’t understand “why he didn’t force the kid to use another cup.” The father had to explain multiple times that they tried that and it resulted in two trips to the ER for dehydration. This one little thing, a cup, has brought on so much stress for the parents of this boy – medical bills (the ER is not cheap), worry over the boy’s health, time and effort finding the exact same cup, getting slammed with comments (kind ones and rude), and getting hounded by news outlets looking for a story after his twitter request went viral. The last I saw on his Twitter, he has gotten over 40 of these cups in the mail. I am sure that is a stress relief, but only concerning the cups. Ben’s parents still have plenty to worry about.
I continued digging and found plenty of parent blogs and this article on the hardships of raising an autistic child. Some of the postings include:
“It has hurt our marriage beyond belief. It has caused us to fight quite a bit, something that is very common among parents of special needs children. Initially, my husband blamed me for our son’s behavior — I was the reason he was so difficult.”
“My daughter is in mainstream pre-school and she sometimes acts aggressively towards other kids, hitting or biting them. The teachers and some other parents have accused me and my husband of not being strong enough disciplinarians with her; some parents have attempted to get my daughter kicked out… Even my own extended family has said we either don’t discipline her enough or are ‘too soft on her’ — as if enough time outs would solve my daughter’s problems.”
“Once he was diagnosed, I gave up going to law school to manage our son’s therapies. He has TSS [therapeutic support services workers] come into the home twice a week for two hours, and I take him to occupational therapy once a week, which is 30 minutes away. My other two children now have speech therapy as well (but no diagnosis of anything yet) and there was just no way I could find time for school and all of their therapies and appointments.”
Those are just a couple of stories from a few parents. But I imagine that every parent of an autistic child has similar stories. It’s not easy raising an autistic child.