Last night Richard and I had one of our conversations. It’s the conversation that starts with, “If only we’d known what we know now…” The conversation that continues with, “If only we’d known our friends, particularly the ones whose neurology we don’t share, the ones who are Autistic…” It’s the conversation that ends with both of us looking at each other and shaking our heads until one of us says, “We would have done everything differently…” And then the other joins in with, “Literally. We would have literally done everything differently!”
One of the biggest motivators I have for continuing to blog about autism is this idea that everything would have changed had we known what we know now. How different our lives would have been had our introduction to autism not been abject fear, but to adults who are Autistic. How different our approach would have been had we not reacted to the news of our daughter’s neurology with terror. How much money, time, energy, not to mention pain would have been avoided had we not listened to all those non-autistic people who greeted our daughter’s diagnosis with, “Here’s what you need to do…” “Here’s the name of a therapist/neurologist/homeopath/nutritionist/DAN doctor, call them now!” “You should try…”
I’ve written about all of this before, but since I typically blog Monday through Friday, many of you may have missed those posts, so here are just a few…
What I Wish I’d Been Made Aware Of When My Daughter Was Diagnosed With Autism
How Fear Drove Me To Pursue A Cure
We Are in This Together
A Fantasy For Parents of Newly Diagnosed Autistic Children
To The Person Who Googled “I Don’t Know if I Can Handle Autism”
What we were told about autism was WRONG. Everything we were told during those first few years after Emma was diagnosed have NOT proven to be true. Having an Autistic child does not mean the entire family will be dragged down. No one need “sacrifice” their life to support another, in fact, our lives are enhanced by each member of our family. Each of us brings something unique and special to the family. Having an Autistic child is not the same as having a child diagnosed with cancer, this comparison is incredibly hurtful to my child, to your child, it is offensive to all of us.
We have been told all kinds of things about our daughter by non autistic people. Not one of their predictions has come true. NOT ONE! Read that again. Nothing we were told would happen, actually has! Think about that. Being given an autism diagnosis for your child is like listening to an anchorman predict the weather a year from now. But we believed every single one of those pronouncements and then behaved as though each dire prediction was fact. If I’d known all the people I know now, the people I’ve interviewed, whose blogs I read, all the people I am fortunate enough to call my friends, who have changed my life and helped me understand autism and what it’s like living in a world that doesn’t accept them, growing up with parents who believed they were doing what was best for them, but who were being told the same sorts of things we were told… Had I known all those people when Emma was first diagnosed, our response to the pronouncements and predictions given to us would have been to laugh and walk away. Literally. We would have laughed and walked away.
We would not have hired the agency who provided us with round the clock therapists. We would not have shuttled Emma from one doctor to the next. We would not have spent all those nights lying awake, staring at the ceiling fearing what would never come to pass. We would not have lost all those years, years we could have spent actually enjoying and loving our child, but that were spent in fear, engaged in a war on her neurology. All those years when Richard and I felt beaten down, could have been spent embracing this amazing being who has taught us so much. The challenges any parent faces, exhaustion, sleepless nights, worry, these would certainly have been a part of our story, but the terror… the terror did not have to be a part of it.
So here’s the truth about my Autistic child:
She is a human being with desires, wants, needs, emotions and feelings, just like any other child. If I treat my (Autistic) child the way I would want to be treated, with unconditional love, respect, encouragement and support, I will have been a good parent. If I can be kind, patient, vulnerable and willing to examine my preconceived beliefs about what it is to be a human being, while making amends for my mistakes; I will have led a good life.
Emma and Nic ~ 2003
You both are great parents, you are doing a great job. Now that you know better, you are doing better and your better is doing a lot of good in this world. See, you kept trying and Emma responded, she found her way to you and you found your way to her. And that’s all that matters, you are here now; you are forging ahead with great info and changing the world. Thank you for blazing the trails and most of all, thank you all Autistic Self Advocates educating all of us to create a better world; we are in your debt.
“Thank you for blazing the trails and most of all, thank you all Autistic Self Advocates educating all of us to create a better world; we are in your debt.” Indeed we are!
Indeed, there is a LOT of misinformation out there regarding characteristics of people with autism, and/or people who may have autism who explain their own experience as if it applies to all others on the spectrum. I remember reading things like: that persons on the spectrum don’t have a sense of humor or that they don’t want to be around people. I realize that some (definitely not all) on the spectrum may take things very literally, and thus their humor differs, or that their ability to display or express their humor differs. I also realize that loud crowds and other aspects about being around people can grate the senses for persons with ASD. But, it’s certainly NOT that they lack humor or lack interest in relationships. Here’s to hoping that as more and more people gain understanding, persons with ASD will be better appreciated and understood. Thanks for helping in that regard.
Thanks for your comment LInda. Appreciate it!
This is a great chapter for a book on “early intervention” for parents.
Absolutely, great idea about a book.
See comment below!
Please let me know if you really do this. I would love to contribute.
Pavarti – I intend to begin seeking submissions and will write a post about this. If you’d like, send any submission to email@example.com And thanks so much for being so enthusiastic as it helped motivate me to do it!
I just created a new folder entitled – Early Intervention: The Book
Will begin seeking submissions!
There’s a book called “Disability is Natural” by Kathy Snow that has wonderful chapters on “early intervention” and the dangers and harm it can cause. Goes along great with your blog post here and your philosophies. It really changed my view toward my son.
Thanks for the recommendation, Marilyna. The only thing I have read by Kathy Snow is her argument for person first language, I admit I’ve avoided her ever since. I will take a look.
You don’t like that article?
Just wrote a post about person first language – https://emmashopebook.com/2013/06/27/person-first-language/
I understand she wrote it a number of years ago and perhaps she has rethought her position…
Kindness and caring can, in many instances, supersede all the knowledge in the world. If you are a human being you can be kind if you so choose – even towards autistics.
((((Judy)))) You are one of the people I wish I’d known when Em was two years old. Even so, I am just so grateful to know you NOW!
Oh, Ariane, please think how very, very lucky you and Richard are for realizing the truth while Em was still very young! Imagine the parents who will never get it. Imagine the worry, the pain and the terror for 20 years, 30, 50… A lifetime. You blog, Ariane, so you can save parents from the fear induced and the devastation caused by those who want to ‘fix’ Autistics. The people/organizations that see us as damaged and less than others. And who preach to all that we are victims and our lives a tragedy! Keep blogging love, all the non-Autistic parents I meet (and send your way) need you desperately!
Love to All of you,
(((Renee))) I do feel lucky. I really, really do! Thank you for all your kind support and encouragement. I often think of you, your words, your wonderful posts about parenting, fills me with hope and joy!
And imagine what those parents who will never get it will do to their children in those 50 years.
Beautiful, I agree completely. I remember reading the Autism books when Ninja was first diagnosed and thinking, “am I delusional? I just don’t think that’s going to happen…” Turns out I was right. I knew my child.
I am always so happy to hear from other parents who didn’t have our experience! Makes me so happy!!
Thank you for your writings. As always, great 🙂
Thank you so much Jolanta!
“What might have been is an abstraction
Remaining a perpetual possibility
Only in a world of speculation
What might have been and what has been
Point to one end, which is always present,
Footfalls echo in the memory
Down the passage which we did not take
Towards the door we never opened
Into the rose garden.” T.S. Eliot, from Burnt Norton
But my dear friend, you are in the rose garden, you are where life is abundantly beautiful and fragrant and rich. And you appreciate it with every inch of your being, with every sense about you. Because of where you have been, you can now see and appreciate where you are. Please do not spend your time in this glorious garden that is your life wishing away what has been your life. Instead celebrate it as a process and continue sharing the positive message of arriving in the rose garden to all who will read. Onward and upward. 🙂
Onward and upward, indeed! 🙂
Thank you for taking the time to blog! Your insight, opinions, knowledge, and experience helps me. It helps me w my own blog and more importantly as a parent to Cali. Even helps me as a parent to my NT child, Ava. So thank you for your time and effort. It is far reaching!!!
What a lovely thing to say and leave here for me!
Your blog represents an invaluable and irreplaceable resource of lived experience and reflection.
Aw… thank you so much
((Ariane)) This journey is rich… and if you hadn’t taken the other path… you may not have the same insights to share with others. This is a gift that you offer now: you honour Emma (and H, and others) with your willingness and bravery in looking back and your openness to examining what you might have done differently.
H and I are reading The Hobbit right now and this quote resonated with me:
“Where did you go to, if I may ask?’ said Thorin to Gandalf as they rode along.
To look ahead,’ said he.
And what brought you back in the nick of time?’
Looking behind,’ said he.”
~ J.R.R. Tolkien, The Hobbit
You are changing the world, Ariane… sure – maybe just a tiny corner of it – but it is amazing and powerful.
I am so proud to know you.
(((Leah))) Thank you dear friend for your love, support and encouragement.
“Being given an autism diagnosis for your child is like listening to an anchorman predict the weather a year from now.”
I love this line. It’s so true. Do you trust the anchorman when he tells you what the weather will be 3 days from now, or sometimes even tomorrow? No, you do not. But people believe the absolutist and dire predictions of what life will be like for autistic kids…yet individual human development is far more complex and capricious than the weather.
(I’d’ve done things differently if I’d known more autistic people when I was younger, too.)
Richard (and my mother) always say weathermen have the best job going, where else can you be wrong more than 50% of the time and still get paid!
Your writings are always so spot on, and frequently, very moving. This one is just too much! Coming to the realization you have come to takes great strength and clarity. To push against the “norm” of what “convention” seems to dictate for Autistic children takes a lot of determination, and I’m so, so pleased you have.
Early Intervention for those on the Spectrum seems to have become 40 hour therapy weeks, and drilled lessons filled with crying and frustration. It saddens me that it only seems to serve to strike fear in the hearts of parents, frustrate the children, and create an environment of pressure and anxiety. But this should not be! Early Intervention is a wonderful tool when used in the right way. Fear, pain, and sadness are NEVER in the picture. Those are not therapy tools, those are torments and humiliations. EI is not supposed to blame parents, kids, or anyone else. It is meant to support the family, support the child, as whole complete beings; and to offer tools that will only enhance life, not make it more “typical” or more “appropriate.”
Please continue writing, and sharing your thoughts. You change a bit of the world every time you do. 🙂
Thank you Melanie! So appreciate your kind words
Ariane, this is just so beautiful. You and Emma inspire 🙂
And Richard, too, of course!
Happy, happy 4th D. and thank you!
Girlfriend….what poetry has just been written. Wow. And to quote another Emma, can I just say (!) I have spent a most miraculous day with my daughter as she emailed the director of admissions at our local state community college regarding dual enrollment issues. So, you are very correct, what we so firmly, righteously were told when she was diagnosed has very little semblance to who she is at this moment. And all the worrying I did helped no one, least of all myself.
(((Paige))) please give Emma a hug from me. Thinking of you both (I always am!)
Thank you so much for sharing your experiences and knowledge with us. I am a relatively new ASD mum, 20 months old to Autism, with a almost 4 yr old and a almost 2 year old, both on spectrum with diagnosis’s of PDD-NOS. My only wish is that I had met people such as yourself and the couple of Autistic Self Advocates that I have been fortunate enough to have found via Facebook, 20 months ago. I too, would have saved myself so much pain, so much research, so much wasted time. But I am so fortunate, as 20 months is not long in comparison to some and I’m sure you would have benefited so much from having someone such as yourself to influence you in the beginning. So thank you so much, from the bottom of my (repairing) heart. My children and I are eternally grateful for your kindness.
I have been an autism therapist for 6 years, and I have devoted my life to helping the children and families with whom I work. All of my clients are nonverbal, highly aggressive, (usually with co-morbidities such as Fragile X or CP), and live well below the poverty lines. Their parents are typically undereducated, often functionally illiterate, and uninformed about autism.
I have never entered a home believing that my role is to cure autism or that there is any need to do so. Indeed, it is the families, through their fear and anxiety, who virtually beg me to wave a magic wand and give them back a “normal “child. I never make any promises or predictions for that would be irresponsible and unethical, but it doesn’t mean that I don’t know what I am doing. A huge part of my job is to teach the parents acceptance and reassure them that all will be well and as it should be.
I have had huge success through various methods in helping children become more communicative, less aggressive, and able to engage with their families. More importantly, I have freed up time for the parents to be just that-parents who can just enjoy their kids without having to worry about going through this alone. I am there to support,educate, and encourage and I have left them and their families happier and better able to cope with the challenges ahead.
Not every family is motivated, aware, or have the resources to be effective advocates for their children, and we must have services in place (even us dreaded therapists) in order to level the playing field.
Everyone’s journey is different, and many times early intervention is CRUCIAL for these children, so please don’t dismiss it out of hand.
If therapy does not seem a good fit for your child or family, then by all means don’t use it ., I don’t know a responsible therapist who would encourage you to do otherwise. But please also help fight for services for those who truly need them.
Michele, I agree with you that the proper therapy can be a great help. I do believe in ABA and it helped my son tremendously (though I only recommend Verbal Behavior style), however, I did balance it with the wisdom of trying to give my son a normal life and let him be a happy kid. We could never afford intensive ABA provided by outside therapists, so I had to do the work myself. I think that was probably a good thing in the long run, though sometimes I wonder if he would be much farther along with a wonderful therapist.
I don’t believe crying or misery should have an part in a good ABA (or any type) therapy, and It took me a long time, but I no longer allow ANYONE to make my son unhappy in therapy. Actually, he gets none now, anyway, at the age of 9.
I have never had a child cry because of therapy or done any drilling. I am rogue-not attached to any certain program and I only answer to the families and the social worker/case manager. I am not beholden to any doctor or prescribed methodology . I am paid (poorly) through Medicaid but my actual employer is listed as the child. I work for them.
I am referred through social services for families who are ar risk for abuse…..or who have active addictions, mental health issues, or who are unable to give their children the best care possible for many reasons.
In my world, tragically, mommy and daddy dont always know best, but happily, they can learn to do so. A therapist is their first front line of defense and we work tirelessly to provide the children with positive experiences and results.
Sounds like many of you have not always had great interactions with therapists and I am sorry for that, and luckily most of you dont need the kind of services that I provide. But, many people do and have benefitted immeasurably.
Glad to hear you’re one of the good ones. Yes, my son has been borderline abused by several different therapists (ABA, OT, and PT). I didn’t always recognize it at the time. That’s one of the things Kathy Snows book helped me see. And one of the reasons I love her, though I can’t totally agree with her contention that our kids don’t need therapy.
I have worked with kids who have als been abused by special education teachers, siblings, and their own parents. It is the worst part of my job.
Okay Marilyna, I am swayed and am going now to look for Kathy Snow’s books. 🙂
Please let us know what you think of it.
Michele – what you are describing is much more in keeping with what I wish we’d had. Someone who was willing to put specific “methodologies” aside and see our daughter as not a list of deficits, but as someone who processes the world differently. These are things that have proven invaluable to us and that we’ve learned from Autistic people who’ve been kind enough to share their experiences with us. Had someone explained all of THIS to us, we would have been saved a great deal of heartache.
Also, it was critical that someone explain to us that some children will not communicate best or even well with verbal language, but that does not mean they are unable to communicate.
We can’t go back and change the past all we can do is do better in the present I’m so glad you’re using your past mistakes to help others.
my dear az, i have been at the beach for a week and am just now catching up online reads. this post has moved me to move on. my future books will no longer focus on autism. sure autistic characters will be included as we are an interesting lot. but the terror is behind us now. u r helping folk drop the terror and move on. i plan to do my part to help. laughing and walking away b
Barb – you’ve helped so many people, people like me! We still have such a long way to go before others are able to join us, though…
One of these days I’m going to bring Em down there and we will all hang out at Lois’ house!
I love your blogs and I am so glad things did not turn out as people predicted. Unfortunately I had the reverse, nobody talked about how things could be so hard, nobody told us we would both have breakdowns. Nobody told us we would both lose our jobs, house and financial stability. Nobody told us that it would tear the family apart. Would we have been better prepared had we known? Not sure but it may have helped. Your experience is your own and exactly that and I do respect it. I personally feel more should be said about the ‘negative’ side if it can be called that. Not everyone is strong enough to deal with Autism. I have been made strong and changed for the better but I really would rather not have my child be Autistic. Our family is surviving now because of the help we have received from services outside of the family. Social workers, nurses, Autism Outreach, the list goes on and on. We have had such amazing help from professionals both voluntary and paid. Their work should not be undermined.
Without wishing to offend I hate Autism as much as I would hate any other condition that locks my child in a world they cannot escape from and prevents them from living the life they want to.
I haven’t had time to respond to your comment until now. Here’s the thing… there are a multitude of blogs out there that talk about the “negatives”, in fact, the vast majority of blogs related to autism do that. One of the reasons I continue this blog is to try to counter at least a little of all that’s out there, because personally, I have found such an emphasis on the so called negatives to be completely counter productive. So I’m curious to know how you find them helpful. Does it make you parent better? Does it make you happier? Does it cause you to try new things with your child, or see your child in a more positive light? Exactly how does reading about all the “horrors” help you and your child?
If people want to hear of other people’s struggles because it helps them not feel so isolated and alone that would be one thing. But it seems that many of the blogs out there that focus on how tough things are do so at their child’s expense. How is that okay? How is it perfectly acceptable to write publicly about ones child while essentially blaming them for an entire family’s fragile mental state?
My father was in a wheel chair, it effected all of us. He was in almost constant pain. His physical health made certain things impossible for us to do as a family. But never would any of us have thought to blame him or think of his physical challenges as the cause of our problems. And to then take that to another level and do so publicly on a blog for all and any to read… all I can say is, how would you feel if your parents did that to you? How would you feel if a blog was written devoted to all the horrible things your very existence supposedly caused your family? This is what support groups are for, psycho-therapy, psychiatry, private conversations with close friends etc. People will do whatever they want, but not only will I not ever link to such blogs, I do not read them. I can’t. They upset me too much.
As far as this thing some people say (almost always parents) – “I hate autism” All I can say is – you are trying to separate “autism” from your child and in my experience, this is impossible. Many who are Autistic, identify themselves as Autistic, because autism is who they are, it is their specific neurology and cannot be separated from “them”. So to “hate” autism is to hate them.
As I have an Autistic daughter as well as a great many Autistic friends, many of whom I have grown to love very much, this idea of hating the thing that informs every aspect of their being, is more than offensive, it is cruel. I understand you do not mean it to be, but perhaps you will consider redefining what you mean and how you say what you mean.
And finally, I would like to offer you this last thought – what if the only thing “locking” your child inside of anything is our inability to think beyond our own limiting neurology to better help those who do not communicate and behave the way we expect. Have you watched Wretches and Jabberers? If not, do. I believe it is available for free from iTunes and Hulu or you can rent from Netflix. After you watch it, write me and tell me what you think.
I have the most beautiful little boy I could imagine. He is kind, funny, extremely loving, sweet, imaginative, hopeful and friendly. If only everyone could have a boy as adorable as he is then we would all be happier. He also has autism. I feel so very lucky to have him in our family and your blog makes me so hopeful that the future will be even better than I imagine. Thank you.