The other day I read a wonderful piece of advice written by Rina, a friend of mine, who is Autistic. Rina’s thoughts were what I wish I’d been told when Emma was first diagnosed, so I asked Rina if I could share them and she, very generously, gave me permission. Rina’s words also reminded me of Kamila and Henry Markram’s Intense World Theory for Autism, which was the first “theory” I read that finally made any sense to me or even remotely reflected back what I was seeing in my child.
Rina told me she self-diagnosed early in 2007 after reading “The Curious Incident of the Dog in the Night-Time and was formally diagnosed in 2009. Rina wrote, “…knowing this about myself has been the revelation of my life. I am exponentially happier, healthier, and more confident since learning this about myself. Now I understand myself!” A little later as we were discussing this post, Rina said, “I was over 40 when I discovered I was autistic, so I spent a large part of my life just thinking I was broken, weird, wrong…” Then she wrote, “I was bullied terribly in public school, like most of our tribe, it demolished my self-esteem, I was depressed and suicidal…but not now. I am autistic and proud, awesome and I know it!”
I read Rina’s advice to parents to Emma before posting here. Emma typed, “It nicely states what is important.” So with that endorsement, here you go and thank you Rina for allowing me to reprint your words.
“You know what? I have lots of thoughts, and I’ve had them for a while, about what I’d like to tell parents of newly-diagnosed autistic children. Maybe I’m talking out of my ass. But this is what I’d tell them. (assuming a boy in this example, for ease of writing…)
Your child is autistic. His brain is wired differently than yours. Autism is a disability. He will have challenges, but with the proper supports, he will have a happy, healthy, fulfilling life.
He will follow his own developmental schedule. Ignore the usual “markers”. Throw them out the window. They will be of no use to you.
Try to remember, always, that your son is experiencing the world in far more detail, and with far more intensity, than you are. It will take a lot of time for him to learn to regulate sensory input. His experience of the world (meaning sights, smells, sounds, peoples’ energy, conversation, others’ expectations of him) will overwhelm him on a daily basis. Have compassion for your son. He will be unlike any other child, even any other autistic child. If you pay close attention, with a compassionate open mind, he will tell you what he needs.
There are four things that can be of most help to your son, especially while he is very young: quiet, calm, consistency, and comfort. More than any recommended (and expensive) therapies, these will be of most help to your son. He may have repetitive and/or sensory-rich behaviors, such as rocking, squeezing a favorite toy, repeating favorite words–these help him to find some order in the chaos of the world–if they do not harm him or others, please allow him these behaviors, no questions asked. If they embarrass you–well, quite honestly, that’s your problem and you need to find a way to deal with it.
If your son is nonverbal or semi-verbal, trust me that he is looking for ways to communicate with you. Behavior *is* communication. If there is behavior that upsets you, that seems tantrum-like, there are probably reasons in the environment, there are things that are causing your son pain–again: try to make his world quiet, calm, consistent, and comfortable.
Consistency: I cannot emphasize how important this is. If days cannot be consistent, give your son warning whenever something unexpected is going to happen. I am an adult, and it is still one of my stated accommodations that I need a head’s up whenever something new comes along, or I need a break so I can process the change. If you’re planning to take him along to his sibling’s baseball practice, to stop by a friend’s house, to go to a yard sale, whatever…plan in advance, tell him about it, tell him what to expect and how long it will last. You know what, I think this is common courtesy. Understand what your son needs and be courteous by giving it to him!”
Emma's Hope Book 
Omigosh print this and distribute it, to EVERYONE. Thank you so much for sharing this!!!!!!
Reblogged this on Sonnolenta… A Neurodivergent Journey and commented:
This is an excellent posting, and a lot of it can be applied to any newly diagnosed Autistic person. I was diagnosed when I was 41, so I’ve lived most of my life feeling like I was continually misunderstood, broken and hopeless. I’ve had to completely start over, learn to view myself in a kind and nurturing light, and leave behind the hurtful and abusive voices of certain people in my life- sadly, my Mother and Brother. They refused to accept my diagnosis, and refused to accept ME. It was easier for them to see me as a broken, defective person. They still do, and I think they enjoy being “martyrs” and garnering sympathy from others when they explain the “tragedy” of my existence.
I’m not broken. I’m not defective. I’m not a tragedy. No Autistic person is.
Please read and absorb Rina’s advice in this post, and share it far and wide.
I’ve been volunteering with kids with developmental disabilities, and now have a deep and profound respect for their parents! God bless you.
And I thought you’d appreciate this: http://karenwriteshere.com/2014/11/09/special-needs-kids-can-teach-us-a-thing-or-two-about-humanity/
So perfect. Particularly about the part that he can lead a happy life. It’s a hard life but it can be happy and oh so much more rewarding than attending hours of children’s sporting events and collecting plastic trophies. Truly.
I am also proud to be of the “autistic tribe”!
Great advice Rina I know it will help many parents.
Totally love this post. The hardest part for me is letting go of the “typical” developmental milestone thing. It’s ingrained. (Back story: I am a licensed early childhood teacher in both regular and special ed….they basically beat the developmental milestones into you.) And I have a NT daughter. So, it is something that I work at….realizing that my son is on a completely different developmental path. It is hard sometimes. But SO important.
Lots of common sense here. 😉
Easily the best advice I’ve ever read for parents who have a child newly diagnosed. If people were to follow just these things they’d save themselves and their children a huge bunch of heartache and headache. Sigh.
Beautiful.Thank you. this speaks to me and to my son. Processing breaks are incredibly important. Love the matter-of-fact tone we as an awesome community are adopting. Because you know what? Our wayS are equally valid — and disseminated knowledge like this helps so much in that fact.
I should say the meltdown-tantrum distinction has been very helpful for me, especially since my meltdowns are internal (I write as as a fellow person on the spectrum diagnosed in her 40s!).
Love,
FSM
I also felt much better after I learned I was an aspie. Like Rina, I spent most of my life until mid forties thinking there was something wrong with me, and it ruined my self esteem and made me make mistakes in my life that I’d paid the price for.
The usual markers are misleading. I spent many years trying to follow the ‘usual markers’, trying to be like everyone else. but those weren’t even my goals, and were of no use to me.
behavoir is communication, and some autistic people communicate through touch. I do.
And yes, an autistic person can become overwhelmed if not given proper warning when something’s going to change in his routine. every word is true.
“Your son will be unlike any other child, even any autistic child.” how true. I’m not like any other autistic person. other people on the spectrum manage to hold on to relationships, or at least want them. I never did that.
great post, seeing the world from the spectrum, where it looks different.
Thanks for sharing this – it reminds me of a photo I have seen – the quote on the photo is “God doesn’t make mistakes”
Reblogged this on anachronism1986's Blog and commented:
Help is Here.
Pass It On.
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Very important message! I wish every parent could be handed this information when they receive an autism diagnosis.
Watch. Learn. Listen. Go easy This isn’t stoneware clay on the wheel, here – it’s porcelain – no grit to it. Do it wrong, it’ll crumble (or rather, it can). Do it right, though – and it will shine.
I started with the usual type of clay in college, and later did *some* work with porcelain. Like autists, porcelain needs a gentle touch to become *beautiful*
I believe honestly autism is not a disability, rather a different ability. When we are able to spot their interest or hobby, and we support it with the right environment, they will excel well beyond our wildest expectation.