What follows is a guest post from my husband, Richard Long…
After Ariane’s post What’s Wrong With Autism Speaks yesterday, I thought I’d throw my three cents in here. I didn’t know ANYTHING about autism when our daughter Emma was first diagnosed–except that it was BAD, very BAD and that I should be terrified. My wife went out and read most of the books written about autism at the time, mostly written by parents of autistic children documenting their torturous journey, many about the miracle cure they found that “cured” their child.
Like most guys, I Googled my ass off to try and bottom line the situation. And the news was BAD. My child was probably incapable of feeling empathy, of understanding sarcasm, of connecting with other people. Wow. Since Emma was making very little eye contact at the time and was not interested in cuddling or hugging, I thought this all had to be true. Poor Emma. Poor Ariane. Poor me.
I was told life would be difficult. Meltdowns, speech and language processing issues, OCD symptoms, toilet training. I watched horrifying videos like the ones made my Autism Speaks, (I won’t post links here, but they are on the other posts I linked to earlier if you want to get the crap scared out of yourself as well). I was told that a cure may be possible if we ponied up enough $ to Autism Speaks or TACA, so I opened my wallet. I was told about other miracle cures from casein-free, gluten-free diets, hyperbaric chambers, even stem cell therapy! We actually tried them all. We were so very desperate to “save” our daughter.
Then a true miracle happened. Ariane discovered the blogs of adult autistics who were telling a very different story. They DIDN’T want to be “cured.” Autism was part of who they were, as integral as any other component of their personalities. We were told that there were many advantages of autism: heightened senses, high intelligence, great analytic capabilities. I discovered all the famous inventors who were probably autistic.
Most importantly, we learned that what you see isn’t necessarily what you get.
We thought our daughter couldn’t understand what we were saying. Why? Because A) she didn’t react like she was listening B) she didn’t comment on what we were saying C) she never spoke about things like that herself and D) she didn’t seem capable of very much speech at all. But now that we have found new communication systems, it turns out Emma understands EVERYTHING we are saying and has AMAZING things to say about her world. She is HIGHLY intelligent (I suspect she is more intelligent than me). Her sense of humor is incredibly sophisticated. She thinks about some things we never considered at all and sees things in such a creative, unique way.
Live and learn. It took us SEVEN YEARS to realize these things. During that time, we really did think of our lives as tragic. And now I can see how much better all our lives would have been if we had received the right information about autism from the very start. Information that came directly from autistic people, rather than people who claimed to “Speak for Autism”. Information from the parents of autistic children who had also discovered the truth about autism from adult autistics. Parents who weren’t looking for a cure, but instead trying to help their children communicate more effectively and deal with the other issues that make life difficult.
It’s a brave new world for us. Thank god. “Better late than never” I keep repeating to myself. But better yet, my hope is that all children who are born autistic are lucky enough to have people around them who actually understand what this means, that don’t look at this as tragedy, who are ready to help in the best ways possible because they have truly useful information available to them.
And I have never seen any useful information come from Autism Speaks. Then again, if they had said something useful recently, I wouldn’t know because I stopped listening to a group that never speaks with the voice of actual autistic people.
Speaking of which, yesterday Emma had another writing session, which Ariane will post in full on her blog tomorrow. It is mind-blowing so don’t miss it. Here’s a preview: In the session before last, Emma was taught about an inventor of oil pumps for train steam engines. At the end of that session the teacher asked Emma to think about what she would want to invent. So yesterday the teacher asks her what would be a really great thing to invent. Emma’s response:
“Let me tell you that it is not a train engine.”
What is it then?
“It is more from the future. It is a spaceship.”
I can’t wait to show her my UFO videos tonight.
Summer 2008 ~ Richard, Em and Ariane
Emma's Hope Book 
💕 Thanks for writing this, Richard. 💕 It’s a given that our daughter’s intelligence out strips mine, I won’t comment about whether she outstrips yours… 😱
Thanks for inviting me Ariane. Not only is Emma probably smarter than me, at the rate my brain is deteriorating, she’ll be ten times smarter in no time 😉
While I understand that you are grieved you spent such a long time mourning your daughter, think about all the new parents who have been spared that journey- thanks to you. Of course no sacrifice is worth the suffering of another, but at least you know it’s not been in vain.
And Emma reminds me so much of Sophie on that photo 🙂
No grief. No mourning. Just joy and gratitude. As for making sacrifices, that’s just part of being in a family.
I am sorry. I think I misspoke or wasn’t clear (a bit early for my mind perhaps). What I meant to convey- awkwardly- was that even though the first years of parenting Emma were difficult for you, the lessons you have chosen to teach others as the result are invaluable. Thanks to your wife’s blog I was able to come across these perspectives while my daughter was still a toddler- and I am forever grateful.
I’m forever grateful to Ariane too 🙂 Or else I would have been stuck in all that fear. Thanks Sophie.
Yea for the daddies…thank you for guest posting! Yep, we felt the same, all fear, etc. We were the ones that needed therapy more than my kid at the time of diagnosis!
Thanks fellow dad! You know, I started a parent support group a couple years after the diagnosis because it was difficult to talk to my friends about this stuff. Almost all the people who came were moms and I was usually the only guy there! Wished I’d known more guys like you back then, when I was really crazy. Or crazier.
Actually I am a gal, but I a big supporter of dads expressing themselves and getting together. I run play groups, special needs bowling, and other events so both moms and dads can come and meet. It is so important to find your “peeps.” My husband is a great daddy to our little girl with autism (5.5 years old now). He is her favorite, hands down!
Sorry about the misperception. Oh well, give your best to hubby and daughter and keep bolstering the troops.
Richard spoke my heart in this post. Our journey echoes yours. I am so grateful for our change in direction. I no longer cry tears of frustration and despair. Now I cry tears of overwhelming joy and thanksgiving. Our kids are such gifts! Can’t wait to read tomorrow’s post to see what Emma wrote!
Thanks Lisa, things are looking a whole lot brighter now, aren’t they?
Yes definitely! Life is good!
Completely unrelated to the topic at hand, but since this is the first time I’ve been introduced to your blog . . . your daughter looks so much like my sister, except even prettier (as my mom puts it, ‘Dawn apparently got several visits from the Nose Fairy!’ Yeah, my mom’s pretty hilarious!), and there’s your daughter with her adorable button nose. My advice? Lock her up until she’s 30. 😉 Emma’s adorable now, but she’s going to be a knock-out in a few years!
And being her dad, I’ll be the one installing the electric fence around her.
Thank you, Richard, for this wonderful post. I am adding it to my “best” pile – the one I use when people ask me for good things to read about people with disabilities. I love how your post summarizes up a parent’s journey and provides so much insight and love.
Thanks so much Corbett. Very nice of you to say 🙂
Hi Ariane and Richard,
You are a beautiful family. I discovered your blog long time ago, and I always thought Emma was very intelligent back then. It makes me so happy to see her doing all the wonderful things. I cannot wait to read a book written by Emma in the future 🙂
I just wanted to comment that many of the parents who are pursuing medical treatment have a child who regressed after typical development (estimated about I/3 of the ASD children), like my child who first looked like a stroke patient in terms of language then lost almost all of her speech, lost motor skills, stopped playing with her friends and sister, stopped chasing bubbles, developed extreme anxiety, cried all day, and the list goes on. She was 4 years old when this happened. We found the right doctor after traveling all over the states and doing all the things that did not work, and finally she is doing fantastic now.
I noticed that Richard wrote, ” my hope is that all children who are born autistic are lucky enough to ………………..”, which I liked it, because I think there are subgroups of children and adults who are put in the same “Autism Spectrum Disorder”.
Maybe Autism Speaks is focusing more on the regressive group, since the founders’ grandchild regressed, I believe? I don’t know. I never liked Autism Speaks for many other reasons, though.
Anyway, I look forward to reading more about wonderful things your precious daughter does!
Asako
Thanks much for your comment and for following the blog Asako. I think Ariane is doing wonderful things here that are helping a lot of people. She sure helped me 🙂
Hi Asako,
I hear this hypothesis about children with “regressive” autism supposedly being in a different category altogether from autistic kids who don’t show regression…but actually, autistic people experience “regressions” at all ages. I know of several people who did not have regressions as children who had them later, in their 20’s or 30’s, when they lost abilities they had had, or experienced some kind of reconfiguration of their abilities that left them seeming “more autistic” than they had before. (Of course there’s no such thing as “more autistic” or “less autistic,” but there are more and less intense physical and linguistic expressions of autism.)
Children who experience a regression early still may be different in some way from autistic people who don’t have a regression until later in life, but I think it’s less than clear that kids who have had a regression are actually distinct from other autistic people, who may simply have them later.
Hi Chavisory,
Thanks for responding to my comment. If I start, it will be too long one. So I just want to say that I wish all the children to be able to live life to the fullest potential no matter what their conditions are. This is what I hope for my daughter and all the children in the universe.
Hey Richard, nice to hear from you and read the Dad’s perspective. I think that while the initial diagnosis is hard for both parents, the father is in an especially tough position. At least I know my husband was – trying to be strong for his wife and daughter, feeling that as a husband and father he somehow “failed” to take care of his family in some way….and then having to hide those feelings and be the tough guy.
After Risa was dx’d, I was so caught up in grief – both for my daughter, whom we knew wasn’t like other kids her age, and my brother, who had just committed suicide. It’s a shell shock that I still don’t know if I’m recovered from.
Last year, when we got her diagnosis of atypical Rett’s, it was another huge blow. I had gained so much hope from reading Ariane’s posts and of how amazing Emma was doing. But the fact is, Risa is likely never going to speak. We are trying alternatives, just like we have all along. But the physical issues she has with her autism, as well as her volitale temper at school….sometimes I feel like I’m right at the beginning, all over again.
It makes me so happy that this blog, which started out with such humble intentions, has become such a hope to parents. It’s like Ariane let out this big secret that was being held from us, and in shouting it from the rooftops, it gives us courage to follow our instincts instead of being “told” what to think and feel about our kids’ and their potential. Now, when I take Risa to her developmental pediatrician, I pay no mind to his old school, meds and ABA is the only route mentality. She works with several different doctors/specialists/and therapists. It truly does take a village to raise a child, and for me, Ariane has been a huge part of mine. And that means you to, Richard. 🙂
Thanks much Angie. Yes, men are taught that being a tough guy is what “being a man” is all about. Some of us discover along the way that vulnerability is an act of courage. Others stay tough on the outside and privately seek the support of close friends or family members. Others just suck it up the way we’ve been taught to do and soldier on. All in all, the most important thing is showing up as a parent, not matter how you decide to cope with things. Sorry to hear about the Rett’s diag. That must be very difficult. This is a great place to come for support.
I do hope that more struggling fathers find this.
I am thankful that I had the benefit of other thinking fathers forging the way ahead of me, taking the bullets of fear and despair for me, so that I could start my life with my son as the beginning of a grand adventure rather than the end of one.
“so that I could start my life with my son as the beginning of a grand adventure rather than the end of one.” What a great way to put it. I feel exactly like you do now. So glad you’re getting off on the right track instead of the rusty rails I’ve been riding so long.
Like I said I hope other fathers find you soon. A month ago I started my blog to be light-hearted and funny using the endless bafflement Dmitry brings into my world, but I got derailed already what with the goings-on of Autism Speaks.
Done kicking the autism anthill for at least a little while, and getting back to my intended purpose: the gentle, sweet, edifying world of garbage-eating. (gross)
Thanks again for the guest post.
wow such a great post Richard, you have such an amazing family unit, the picture of the three of you brings the tears on 🙂 blessings to you all and for Ariane and her amazing writing that brings the most needed awesome awareness to this planet and praise praise to Em! God bless you all
Thanks so much Bird 🙂
Absolutely beautiful Richard. Thank you for sharing this. The beauty of the photo at the end of your post, and the beauty in the relationship that your family clearly shares is simply stunning. Bravo
Its interesting what happens when you stop listening in the conventional way and listen with your instincts. I can remember years of fretting over my son’s Asperger’s diagnosis until I did an interesting thing. I would find myself closing my eyes, drawing my thoughts inward and asking myself, “What are you seeing? What are you hearing? What are you feeling? What does he need from me, not what do I need from him or what do I need him to do.” When I changed my perspective from myself and how this was effecting our family to how the world was affecting Aidan life changed dramatically. He has opened my eyes to a whole new world and has lead me down a life path I never saw coming but in retrospect was right in front of me all along. He is a most miraculous boy and I am grateful for his unique perspectives. His world knows no filters and really makes me think and acknowledge the absurdities of so many situations in life as most of us live it. I am a fortunate woman indeed.
Richard (and Ariane and Emma): just want to say that the photo of you three would look brilliant with Autism $peaks’ BS divorce statistic running across the bottom of it. 😉