Just to be clear, it’s not like I’m only now starting to read books to find out more about the condition. I mean, I’ve got to be pretty negligent as a parent of an ASD kid to not read up and learn as much as I can in these past two years since his official diagnosis!
It’s just that I figured now that I’ve had a chance to read several, I’m kinda in a better position to comment on what I think is good, and what I think isn’t. Well actually let me just focus on the former first.
For this entry, I want to start by talking first about the different categories of books out there on ASD. It can be quite a messy jungle of manuals and personal accounts so one needs to sieve though the ‘noise’ to find what’s best. I’m still in that process, but for now, I can roughly say that there are generally the following 4 categories:
- Manuals and academic texts: gives you all the doctrines and theories etc. Can be depressing though cos while it helps that there are good people out there continuing to research on the condition, what they put forward may not always gel with real-life experiences!
- Memoirs: these would usually be written by the main caregivers (mostly parents, moms especially) to describe how ASD affected their families. These can be helpful as I feel less alone when I read them cos at least I know others have had similar journeys. But since every ASD child is different, whatever ‘remedies’ are prescribed by these memoirs may not apply to my situation with Caleb.
- Insider accounts: mainly written by adults with autism. Arguably the most famous would be Temple Grandin. Whilst such accounts shed more light on the challenges, it’s often written by those who’ve “made it” so to speak, but what I need is the “what should I do in the meantime” kinda advice. One exception though is the book The Reason I Jump, which was written by a Japanese autistic teen (translated of course). This book gave me some helpful insights into what goes on in the minds of ASD kids.
- Fiction that involves ASD characters: more as entertainment than anything really useful. For instance, Rain Man and The Curious Incident of the Dog in the Night Time. The latter I highly recommend though cos it’s actually quite hilarious and a great read as it’s written in the first person by a fictitious young boy with autism and a great gift for numbers. The former (which was also a hit movie) might be a bit skewed and misrepresentative, so perhaps try reading The Real Rain Man instead, which is what Rain Man was based on.
Safe to say, the best one can do in this book jungle will be to pick and choose what you need and don’t overload on too many, cos it can be overwhelming!
Now on to the first book review. I want to strongly recommend A Regular Guy – Growing Up with Autism written by Laura Shumaker published in 2008. Tracing her journey as a parent for her autistic firstborn Matthew from birth to the age of 20, I found it hard to put Laura’s book down as I read the details of their family’s harrowing journey of raising him. I loved the raw honesty and felt her anguish with every challenge that was thrown her way by Matthew. The puberty years were particularly heart-breaking!
For me, it felt like I’m seeing my life flash before my eyes; the difference here is that I’m not seeing the life I’ve lived so far flash before my eyes, but rather the life that’s to come! Like a flash forward more than a flashback!! Sort of a a warning as I look ahead to the next 12 years with my 8 year old. It’s not like I think he will necessarily be as challenging as the author’s son – but then again, do I really want to just sit back now and do nothing to head it off, just in case it does become just like how it was in the Schumaker household?!
In any case, my key takeaway from this wonderful book is the reminder that Caleb is a gift, and I must daily remind myself to demonstrate my awareness of this fact in positive and encouraging ways so he knows I love him unconditionally. A tall order to be perfectly honest cos there’s still a strong part of me that wants him to be ‘normal’, like everyone else. But he won’t ever be ‘everyone else’ nor ‘normal’, because he is after all who he is. As soon as I accept that, and celebrate that, the better it will be for both of us and for the whole family. So I must remember to applaud every good thing he says and does like it was an Oscar-winning moment, rather than blaming him for every misstep he makes.
Another key takeaway was how not to neglect the neuro-typical sibling in the process. Andy, Matthew’s younger brother, was at most times stoic and sensible, and a great help to his parents in managing Matthew. Reminds me of my 10-year old Jaedon. However, Andy as he grew up, became at some point reclusive, keeping his feelings to himself as he didn’t want to add to his parents’ stress caring for Matthew. It’s an important reminder for me not to neglect spending quality (and quantity) time with Jaedon so he doesn’t feel like he’s left to fend for himself as he grows up, just because Caleb’s needs seem greater. In some ways having my younger rather than my older boy autistic is probably a little easier, compared to what Laura had to handle, but that still doesn’t mean I should be complacent and neglect Jaedon’s feelings. After all, he’s gonna be the first to go through the tough teenage phase!
Well all in all, lots of gems in this book! I’ll probably keep a copy of it near me over the next decade as a resource, so I won’t forget all these key learning points.
If like me you are also an ASD caregiver, you probably should too.