I have three things I need to say to you.
First. Come. Talk. Find a safe place where you can talk without being judged, somewhere private, somewhere and with someone(s) who will understand and listen.
Second. Fear. Feel the fear. It’s impossible for me to talk about autism without talking about the abject fear I used to feel, every single day, every moment. They say fear can be informative. This was not my experience of it in the beginning, I was running too fast and doing so much to avoid it. Fear drove me to do a great many things I regret. I wish I could tell you I have no regrets, but I do. So, so many regrets. Avoiding the fear is just one of them. I wish I’d sat with it. Leaned into it and listened to it, without believing what it whispered to me as though it were fact. Listen to it, but don’t believe it. Who knows what I might have learned all those years ago. Who knows had I done that, what mistakes I might have avoided. Who knows?
You see, fear was the driving force behind my relentless search for a “cure”. Fear is what made me think anything I did was better than doing nothing. Fear drove me to rationalize some dangerous and very risky “interventions” because I thought to do otherwise was wrong. It was my fear that kept me up at night, on the computer, typing one more search word into Google’s vast engine, hoping I would find the thing, the remedy, the treatment, the pill, the tincture, the doctor, the nutritionist, the biomed doctor, the QiGong Master, the homeopath, the naturopath, the GI specialist, the thyroid specialist, the speech therapist, the occupational therapist, the cranial sacral doctor, the shaman, the Zuni chieftain, the psychic, yeah you read that right, the psychic, each and every one of these people I put my faith in. I convinced myself that this person, finally would be the ONE. They would reach out their hand and show me the path I needed to take.
All those words used to describe autism and Autistic people, our children or parents or siblings, all those words like, “burden”, “epidemic”, “crisis”, the war terminology evoked telling us how we must “fight” and “combat”, all those words like crumbs left in a dark forest were words I believed and used and never, never once during those early years did it occur to me to question them. For those who did, well, they obviously didn’t have a child like mine. You had a child who was less profoundly affected by autism than mine. This was my thinking, this is what I believed in my heart. (This is my story, it may not be yours, but it is the only story I can tell.)
Third. There is a documentary I love. I have watched it many times now. It’s called Wretches and Jabberers. I’m not going to tell you more, you just have to see it for yourself. It’s available on iTunes, Netflix and Hula. You can purchase a copy from Amazon. Even if you ignore every other thing I’ve written here, just watch it. It is a documentary that every human being on this planet should see, because it is about more than just autism. It is about our beliefs and how our beliefs make us behave in ways we might not otherwise condone. It is about prejudice and fear and ingrained thinking and the inherent limitations all of that encourages for those who are different.
And finally remember this – just because someone does not speak, does not mean they have nothing to say. Just because someone cannot make their needs known, does not mean they have none. Just because someone does not tell us they love us does not mean they do not. Just because someone does not look at us, does not mean they do not see us. Just because they do not seem to understand in a way that we recognize, does not mean they do not and cannot. Just because we think they are ignoring or cannot hear us, does not mean they are or do not. Just because we think someone cannot write or read does not mean they can’t or never will.
Just because we feel, in this moment, we cannot handle something does not mean we can’t. With support, we can and we will. And so will our children. They can, they do, and with help, they will. Believe this and you will not only help your child and yourself, you will help the world and all human beings who inhabit it.
Choose to believe.
Emma on her 4th Birthday – 2006
Emma's Hope Book 
that was lovely.
Thanks so much 🙂
“Loving Lampposts” is another great documentary.
There is something interesting about this googled statement; the word autism could be substituted for any other word for any other disorder and/or disease such as breast cancer, downs syndrome, cerebral palsy, epilepsy, muscular dystrophy, etc.
I’ve not had experience personally with most of these, (I had a breast cancer scare recently but the lesion was benign.) My older brother has cerebral palsy and his difficulties were much more challenging then my son’s have ever been, his are not only intellectual (to a significant degree) but also physical. I have known people with Downs Syndrome, and they have been happy and loved, like my son is. I can’t imagine that their early years were a picnic for their parents, but their parents endured and everyone made it out alive.
The difference between many of these disorders is, with the exception of epilepsy and breast cancer, they are visible, therefore when or if a child with them ‘acts out’ society will not judge them as being bad or their parents as not knowing how to be an effective parents.
A child with autism who has a sensory meltdown in the middle of a crowded and noisy grocery store is not being a brat and doesn’t need a swat on the bottom (in my son’s case, spanking only made him more overwhelmed and he would end up hitting himself over and over again.) In those situations, all a parent can do is ride it out and do our best to calm our child and hope that this is one of those days where even if people are looking at you judgmentally, they at least won’t say anything to you. (There have been times though that I’ve wished someone would, just because I needed an outlet for my own frustration and letting go a bit on an ignorant person who feels the need to say something about something they don’t fully know about would have been an ideal target. Fortunately those are the times that typically people don’t say anything so it helped me learn to regulate myself as I also helped my son learn how to regulate himself too.)
Here is the thing about the above googled statement though, every person with autism is different, and every parent of a child with autism also has a different experience. While our children do come into this world with autism, we have about two years to get to know them before we will be able to know if they are autistic, or not. When my own son’s diagnosis finally came down, I was relieved because I finally knew I wasn’t imagining things and now I could form a plan and help him. When the realization hit me, there was that slight tinge of fear (I watched him sitting under a table, sorting baby shower themed confetti while everyone around him was talking loudly and the music was also very loud.) That initial realization washed over my and filled me with a very brief terror, the fight or flight response kicked in for me even. But then after that, my reason and logic took over and I thought, ‘OK, so there is a very strong possibility. Now what needs to be done to help him?’ I was frustrated with the length of time the evaluation took, he was just over two and a half when he began Early Intervention and he was three years and three months before I finally knew.
My point in saying all of this is, autism isn’t a certainty for anyone, neither are any of the other things mentioned above, or any number of other disorders that could be substituted, but each of them comes with their own challenges. My son, in the very early years, was no picnic, but he wasn’t my first, so I was aware from day one that something was slightly off. As he’s gotten older and has progressed, his challenges relating to autism have lessened and/or changed and he’s starting now to have more ‘normal little kid’ challenges. But even with his challenges, he was, and is, still happy, cute, funny and snugly and I love him and he loves me. It wasn’t until later that I learned what his challenges were, and while there was that initial feeling of terror, for me at least, it was short lived. My son didn’t change because of autism, but the way I thought about him did, and suddenly he made so much more sense to me then he ever did before, and I was able to be much more accepting of his challenges then I previously had been. Autism can be challenging, but it isn’t something that anyone should fear. There are other disorders and conditions that a child may have that are much more scary then autism, because they have a high probability to cause injury or death. Nobody has every died from autism though. And really, an early death of your child, is the only thing, in my opinion, needs to be feared. Everything else is manageable.
Your comment reminded me of something someone said to me when I was worried that maybe, just maybe vaccines had contributed to or exacerbated Emma’s autism, she said, “I would prefer to have an Autistic child than a dead one.” Never forgotten that. Brought it all into perspective.
Didn’t get to check back here until now, had a really busy couple of days. I have actually said that myself, to people who have tried to tell me I’m being irresponsible when I say that I know vaccines didn’t cause my son’s autism (he hadn’t received any vaccines for over 8 months when his regression began, not to mention I was able to recognize ‘differences’ in him from birth making him a more challenging infant then any of my other five children before him.) Before I knew the details of studies and science relating to autism and vaccines that have been done to be able to argue from a position of knowledge and data, I would say to them, “Even if vaccines did cause autism, I’d still have my children vaccinated. I’d rather have a child with autism then a child who died from a vaccine preventable disease.” They can’t really argue with that statement, and it let’s them know that my support of vaccines is not merely because of my anecdotal story about my son’s autism and regression, but because I know vaccines are by far the wiser choice for the long term health of my children.
Having grown up anti vaccine and suffered, and watched my siblings suffer, VPDs, and hearing all the lies my parents and others in the AV community would tell, my logical mind (I’m not autistic, but sometimes my reason appears to belong to one who is) was no longer able to continue to pretend my parents and these other people knew what they were talking about. Sorry for the pro-vaccine rant, I know your blog isn’t about vaccines, and I’m not trying to turn it into one. But for too long people have feared vaccines because they fear autism. Autism isn’t something to be afraid of, we go the same direction as with an NT child, it’s just more like riding a roller coaster compared to a hay wagon. Which would you rather ride? LOL!
Well said, Laura. I can tell you love your son, and you are a great mom.
Thanks, Marilyn. I’m the best mom I can be, which is saying something considering I didn’t have the best example set for me, but there is still a lot of room for improvement. I’ll probably get it down by the time my little one is fully grown though :D.
I find some of the search terms people use to get to my blog downright depressing (and occasionally scary).
I hope that by using that phrase in the title of your blog, your response will come up first for everyone who Googles it in the future. When people are despairing, they need to hear the words of someone who has come out on the other side and can share words of wisdom earned along the way. Terrific post, as always.
Thank you so much Musings. Really appreciate your words.
By the way, I have also had some truly horrific google searches which bizarrely led people to my blog. By far the worst are those where they are clearly searching for child p%rn. (Left the “o” out on purpose in case that word would place this blog higher on those searches!)
Needed this today……thanks for the reminders!
(((((Becky))))))
Thank you for this wonderful post. Very inspiring. I too felt this fear and pain and luckily didn’t wallow there too long. I’m in a very good place now.
Angie, so glad to hear!
Oh Arianne, this is one of your more passionate posts IMO! I love this because I felt the fear…I still feel the fear but I know so much more now and I see my daughter more clearly. She speaks to me and I am trying to really really listen. I still consider some biomed possibilities for Olivia but most of all I will listen! Thank you again
for this fabulous forum!
🙂
I wonder how much of they hypebole of the week contributed to this as a search term. A very nice person from Autism Speaks contacted me today (avoiding temptation to roll eyes) I had posted something on Leonard Nimoy’s wall about the percentage that goes to services. Even though that figure came right out of their own fiigures they have to post by law this PR guy sent me their annual report where they group things a bit differently so arrive at a much nicer figure. (Leaves out how conflated the salaries at the top are and lumps in services with programs so then instead of looking like almost half their money goes to salaires suddently they are transformed from 4 percent going to servies to almost 80 percent )
Anyway I thought okay we always say they don’t listen but what if maybe, just maybe I had been emailed by the one person in the organization without an empathy deficit. I told them what I thought of how hurtful their portrayal of autism is are to those who have it and those who care about those who do. I used what you wrote about the I Care for Autism launch and how as opposed to the Autism Speaks model when given feedback they not only took it onboard but acted. (Versus suing an autistic teenager say for a parody site as Autism Speaks did in it’s own infancy. )
I was going to cc you but I never made a note of your email and I will spare your poor blog the whole reply (Since the fundraiser is Sound Off I suppose I could have justitfied a 100 page reply) but here is the nutshell I think of the pain we struggle with and while sometimes that pain gets expressed in anger or even funny ways it still causes pain:
“My life is sometimes hellish due to my autism I will even say that but there
are things about my autism that also are positive. My life wouldn’t have to
be quite so hellish if prominent Autism Organizations actually treated
autism as the developmental disorder it is (i.e. arising in childhood or
conception and continuing across the life span) and if they spoke about
people with autism with the same respect shown to other disability groups.
A friend was deeply hurt in the wake of some of the words thrown around this week in the US. Your organization contributes a lot to that rhetoric. Show some actual integrity and realize that whatever our disability we are actually human with the ability to be hurt when described in hyperbolic ways.”
Gareeth, so glad you told them this, if for no other reason than to have your words on paper (even if virtual). I do not know how they justify themselves, I have met a number of very earnest people who seem to honestly believe they are doing good and who work there. We have a long way to go before their dishonesty is recognized, people are just not aware. It’s sad. But things can and do change. Public perception will as well. I just pray it’s within our lifetime.
What a beautiful post! Love, love, love it.
Well said. I love your writing style more and more every day. As a mom of a daughter with autism, I, too, have felt some of the things you do/did. I even felt what the person who googled “I don’t know if I can handle autism”. When I was in college many years ago, as part of a coarse assignment, I read Dibs, In Search of Self, a book about a child with autism. At the time that book was written, there were still doctors saying that autism was the fault of an overbearing mother. As I read that book, I remember thinking I could never handle a child with that disability. But you know, God gives you the grace to handle what you are given when you need the grace and not before. Don’t be hard on yourself for searching for help for your daughter. I think it’s more than fear that drives us. I believe it is mostly love for our child. We want him/her to be the best they can be. If our child had cancer, we would be seeking for a cure. Even if our child had a genetic disability like Down’s, most of us would still be seeking for treatments that would help her live up to her greatest potential. If there are medical issues involved like a hurting gut or seizures like my daughter struggles with, we would seek answers to eleviate/end the pain so she could function better. In many cases, when underlying struggles are elevated, the autistic issues improve and sometimes even go away. I never fault a parent for trying bio medical answers for their children; however, in the meantime I try to encourage them to find a successful way to help their child communicate. Of all the things we have done for Kim, giving her a voice where she can express what she wants/needs/feels, this was the greatest. It is because Kimberly complained about her gut pain and about having seizures, that I continued to seek answers for her. Now, after 27 years, we are finally seeing great improvement in both these areas for Kim through the Modified Atkins Diet for seizures. Through all this, I have prayed. It is my faith in God that has sustained me throughout the years. I have seen Him give me strength I didn’t know I had. I have seen God miraculously answer many prayers for Kim and my family. I have accepted my daughter just the way she is, but I will always pray for her healing til the day she/I die. If she never learns to talk, that’s ok, but I would love to see her seizure-free one day. Yet, I do have the hope in heaven that one day she will be healthy– leaping, laughing, singing, in heaven with her Lord.
Marilyn, I too read Dibs, though I was a teenager at the time. I didn’t remember that Dibs was Autistic, but I do remember the book clearly. Of course I was reading it as a teenager and not as a parent. I identified with him and was fascinated by him. I have never felt completely comfortable in groups, even as a child I often played by myself, happily so. Now with blogs and twitter and Facebook, I actually feel quite gregarious! I’m much happier being part of a twitter party than an actual one. It’s fun to be part of a group thread on Facebook, I enjoy that far more than if we were all in a room together, which would be far more stressful and anxiety causing.
I loved what you wrote about the single best thing you did was helping Kim learn to communicate. This has been my experience so far with Em as well.
And while I do not believe or have faith in god, I do have a strong faith in love and kindness. I do believe in the power of good/ right behavior and our actions inspired by compassion and kindness.
o be entirely honest there are days I wonder if I can handle it. Months even. I never deny that it can be a very difficult thing to deal with and some days, weeks, and months almost an impossible thing but almost is an important word.
Oddly for me Dibs was a good experience but since it was still required reading in many university’s yes on the parent side not so good. For me it was the first time I ever encountered someone like me in a book (I was 6 or so when I read it) It never actually says autism is what he has but the immediate effect on me as a child was to feel less alone. There was no internet or autistic culture then. Parents were still encouraged to put their kids away and start fresh. I wouldn’t meet an autistic person in the school system until grade 11.
I don’t want to offend you Marilyn since you seem very accepting of your daughter but when people have wished that for me, no matter how sincere it is it is like wishing I would be something other down the road. If I was sure there was a heaven (it’s a vague point in the theology of my religion) I would actually be frightened of the prospect of being someone else there. Happy would be nice and singing with G-d well perhaps nice. Maybe a little scary to sing with someone who can speak the universe into being but if there is such a place I would want to be me.
“I never deny that it can be a very difficult thing to deal with and some days, weeks, and months almost an impossible thing but almost is an important word.”
Right, it’s such an important distinction. It’s the idea versus the reality, what we think we can or can’t handle versus the fact of actually showing up day after day and coping.
In the 12-step rooms they say, “take it one day at a time.” This simple idea has served me well over the years and I expect whatever the challenges I may encounter in the future it will continue to. (Of course it’s very different being the parent of someone who is Autistic and being Autistic. So I hope I didn’t sound as though I thought it were the same.)
Gareeth, I totally see your point of view. However, I don’t wish anything for Kim that she doesn’t wish for herself. She has told me many times (through her typing) that she wishes these seizures would go away. As a point of reference, though much better the past 2 years, Kimberly has had seizures almost daily for 27 years. From 2005-2010, she was hospitalized twice a year for up to a month with irratractable seizures (back to back every 15 minutes for hours at a time) that often resulted in aspiration pneumonia. Then, because of all the drugs she was put on each time. it would take another 3 months to get back to her norm. Little hard to function, you know. Though Kim enjoys communicating via typing, she would love to be able to talk or at least type without mom or another facilitator being around to give her assistance. We believe there is a heaven with God in our future where there will be no more sickness, no more tears, or death so we look forward to that day. Though I fully accept myself, too, I’ll be glad to no longer have to deal with high blood pressure there. 🙂 BTW, you have me intrigued, I now have to get my Dibs book out and read it again. I was sure it mentioned the child had autism, but perhaps my professor told me that.
No I am always careful to point out the differences myself. I can’t really put myself in the shoes of a parent althugh perhaps slightly better than some having worked in respite care for eons, but I won’t know what it feels like to be a parent.
When I am doing well sometimes I think it could be harder to be the parent, that is if you are a caring parent. Once I thought it mattered a bit how the autistic person was doing in terms of functioning but over time I have started to doubt that. When your child needs constant care and in some cases always will some people adjust to that and still can be happy and loving. Some don’t. If your child shows promise of achieving some of the things that “normal” children do as they grow and then still somehow never quite make it, never quite manage the things that seem so simple sometimes I wonder if that could be more painful in the long run. Watching a loved one reach for something that sometimes they briefly touch to full flat on their face over and over again. Of course for a person like me you can be your own loved one in a way.
I’ve seen all sorts of outcomes in terms of love, acceptance and happiness.
I wasn’t actually referring to the seizures with what I said Marilyn. Autism is pervasive so altering that would alter who you are. A seizure free after life wouldn’t bother me. I have bad arthritis and I wouldn’t feel I was less of the person who I am without that. Although the pain shapes me, it is too a far less extreme than autism.
I should clarify too that the basis of my objection to being other than I am either here through some unlikely cure or in some afterlife is not because I don’t believe in G-d but because I know there is a G-d. That was a certainty I had from before I even knew a word for what others called that presence. I choose to believe since it would be hubris to think I could know anything for sure with regard to G-d that there is a reason I am the way I am, and a purpose and that G-d not only loves me as I am but for whatever reason wants it this way.
As for heaven since it is vague in our theology our goal is to make the world better. The world could be better in a million ways not just for people with autism and their families but everyone. So my small way of making the world better even in a year has blown my world completely apart in ways somehow you stop suspecting at my age is to say, Yes I have autism, but however hard that gets,there’s a reason. It should make me no less lovable to people and I am certain G-d not only loves me as I am but wants it this way. I know your heart is in a good place but to me the suggestion I would be other than autistic is to to diminish that love and acceptance somehow. It’s a big deal to me. The only real way I have ever had to make sense of a planet I am mostly not suited for.
Gareeth, since we are dearly loved by God, each of us should love and accept ourselves just as we are. (And we should be loved and accepted by other people as well.) God had a purpose and plan in making you and my daughter with autism and in making me have crossed eyes from birth. Though my parents and ultimately I accepted my vision issues, my parents got me glasses at age 2 and paid for me to have eye surgery at age 8 so I could see and function better visually. It didn’t mean I was any less special or less loved when I had crossed eyes. However, I appreciate that my parents did what they could to make my life easier. Now, as time has progressed, no one can tell I ever had crossed eyes, and I see better without glasses than probably most of my friends. I don’t fault any parent or any individual with autism for seeking treatments to make his/her life better. In some cases, the symptoms of autism may disappear; in most cases, the individual will likely always struggle with at least some part of the disorder. That’s ok, too. That doesn’t make anyone with autism now or in the past any less loved and accepted, especially by God. As you mentioned how the pain of your arthritis shapes you, I think all the trials and joys of our lives work to shape us as to who we are on this earth. That is why the Bible tells us to “consider it all joy when you encounter various trials”. It is because of your autism that you are able to better understand and help others with autism (and their families).. You are making our world better. In regards to heaven, it is my belief that people of all color,shape, size, ages, and different ability levels will be there. But since the Bible talks about us having no more pain or tears in heaven, and that people will see our Lord and be singing praises to Him, I somehow feel like vision, hearing,and voices and even mobility will be restored there, though we will know from where we came. (See Revelation 5:13, Revelation 21:4, and Isaiah 35:1-10) Ariane, I hope you don’t mind Gareeth and I talking about God and heaven on here. 🙂