Yesterday Emma asked Richard a question. It was a question she’d never asked before. It was a question that made us both inwardly gasp and later discuss at length. It was one of those things that was noteworthy and made us both rejoice. It was an example of progress, not just Emma’s, but as I’ll explain, our’s too. Emma’s reaction to Richard crying out when our impish kitty, Merlin leapt onto his back, was what one might expect, except it wasn’t. As all four paws, claws extended made contact with Richard’s flesh, Richard howled out in considerable pain. Emma ran into our bedroom and asked, “What happened Daddy?”
Had we been in the midst of some “therapy” or “treatment” protocol, as we almost always were a few years back, we would have attributed this new, never-before-heard question to that therapy or treatment. We would have felt a wave of euphoria, believing, even if only briefly, that this new treatment or therapy could be credited for her voicing such a question. We would have remarked to each other that this was proof and only later, perhaps the following day or day after that, we might have questioned our conclusions. We might have discussed any other significant thing that might have occurred or we might have waited with guarded excitement for the “next” wonderful thing that would prove to us, once and for all, without a doubt that this thing we were doing was making a difference. As though our daughter would otherwise stagnate without our constant tinkering. As though she would not make any “progress” without our various interventions. As though autism meant complete stagnation and no movement of any kind.
Since we no longer adhere to this line of thinking, we simply spoke of what we’d just witnessed with joy, while shaking our heads at how fabulous it was that we are making progress along side our wonderful daughter. And as we mutually applauded ourselves for the headway we’ve made, we attributed all of it, her question and our reaction, to what it was – life, maturity, learning, growth and the fact that we humans have a tendency to change and progress and how wonderful is that?!
No one told us this seemingly obvious fact when Em was first diagnosed. No one told us this, probably because no one thought it necessary to. Except that in my case anyway, it was necessary. It was more than necessary. It was required. Because with all the misinformation we received upon Emma’s diagnosis, one of the implications was that massive amounts of intervention, forced interaction and jumping through a million hoops was more than necessary, it was required if we wanted to see any “progress.” It was suggested that if we didn’t do all these things, we might as well resign ourselves to the idea that our child would never move beyond where she currently was.
“I can’t stress strongly enough the importance of diving into action immediately. Every expert in the field agrees that early intervention is essential and critical. The “wait and see” approach is detrimental to your child.” ~ Lynn Koegel and Claire LaZebnik
It should be noted, “Every expert” who is NOT Autistic, may believe this, though I’d argue with the word “every.” It wasn’t until I began reading blogs written by Autistic people and talking with my Autistic friends, that I started to seriously question this idea. I also began questioning the whole idea of what “progress” really meant, but that will have to be tackled in another post. It wasn’t until I began questioning the idea, that I then began also questioning who exactly were these people calling themselves “experts” and how none of them were Autistic, nor did they seem particularly interested in hearing what Autistic people were saying. Do any of you find it curious that so many of these so-called “experts” do not seem to personally know any Autistic people outside of a clinical setting? The very people they say they are experts on? Don’t you find that odd?
Can you imagine if a number of men claimed to be “experts” of women and what it is to be female, but none actually knew any women outside of their professional setting? Can you imagine that when women spoke up or suggested these views were in direct contrast to what they, as women, lived on a daily basis, these male “experts” ignored them or suggested they couldn’t possibly know what they were talking about because women couldn’t be relied upon to make sense of such things? Perhaps even suggesting that women tended toward hysteria and being overly emotional? Can you imagine laws being enacted that directly affected women’s lives and their bodies, with a complete disregard for how women felt about such laws? Any of this sound vaguely familiar?
“What happened, Daddy?”
Em dressed as a pink poodle ~ 2007
Emma's Hope Book 
Thank you for this, my daughter has Down syndrome and I was lamenting recently about how no one seems to care what those who actually have Ds are thinking and what THEY want for THEMSELVES…rather it’s all about what their parents or care takers want/think. If those who are meant to be advocating for, and championing a marginalized group of people can’t be bothered to treat them as humans first, how will the rest of the world have a decent example to follow?
I know a young lady with Down’s (in our church) and she has been one of the sweetest and kindest people there, a shining example to other members!
“If those who are meant to be advocating for, and championing a marginalized group of people can’t be bothered to treat them as humans first, how will the rest of the world have a decent example to follow?”
Agree, love this!
Yes, this does sound vaguely familiar 🙂 I think it is so important to remember that natural maturation will happen to autistic kids just like it will happen to NT kids. It may not look exactly the same, but it will happen. Just like other “learning” will happen at a different pace, so will maturation. So, no, all gains cannot be attributed to therapy. This was something that I had lost sight of for a while, until someone (who is autistic) reminded me of it. And I’m grateful she did.
Interesting… I had a similar reminder from a friend (also Autistic) who I’m am also grateful to.
Yep. Yep. Yep.
Excellent post! I have often had to remind people who marvel at the things I can do that their child (usually a child 40 years younger than me!) cannot or does not do that “developmental delay does not mean developmental halt!”
I love hearing the ways that Emma is unfolding like a flower greeting the sun. Her life is a beautiful blossom. Buds cannot be forced to open. She is opening as she (and only she!) should and all is well. We each hear the beat of our own drummer, however measured.
“developmental delay does not mean developmental halt!” Reminders like this are so important!!
K was later being dx, not until 5 (took us that long to get an eval, year and a half!), so the only EI she recieved was speech. No aba, nothing intensive, and part of me thinks that maybe the progress she made was bc her progress was totally organic. No one hounding her to do certain things. Just allowing her to live and develop and be who she is. Of course, I think that NOW. At the time I didn’ stop and think, well, she’s aleady making lots of progress, so maybe we just stick to what we’e doing. Nope, when she was dx it was all, we NEED aba….we NEED social groups…we NEED everything.
AND, my daughter got angry. She hated it all, but WE forced it for years. I hate that we did that to her, just bc “experts” told us we needed to. I should have listened when she screamed, not wanting to go to therapy. Or when she ran and hid when home ABA would come here. We finally found a great school program for her, and dropped a lot of the therapy she’d been fighting for so long. The only expert I should have trusted is the one I gave birth to, who couldn’t have been more clear about her needs, if only I had listened.
Jen – I think a great many feel this way, I know I do.
applause
Smile and *hugs*
Yep, those claws really hurt. Ariane left out what was the coolest part of the story for me. After Emma asked what happened, I told her how Merlin had leapt onto my back and sunk his claws in, demonstrating with my fingers on her back, which made Emma laugh hysterically. The more we talked about it, the more Emma laughed and laughed. It was really sweet. PS we had a great time at the fireworks last night.
Well, you are a pretty fabulous story teller…
I agree so much with all said. I would like to make observation as seen with Emma, who is writing you today ariane, enough cannot be said about the miracle of communication. The ability for our daughter in whatever form to communicate with us and we understand is what i have seen builds on itself. Her self confidence increases each time she “speaks” with another person. I put that in parenthesis because she speaks in many forms..written, typed, writes in our hand and increasingly much more verbal. She initiates now these forms with new people..when she wants… Nothing like this happened before. And, in our case I thank unstrangemind, as Emma is the one who compares herself now to other 21 year olds and we so fortunately are able to suggest she look around and view her uniqueness as a journey.
I know looking back and wishing one could do things differently can be a rut one only digs deeper into, particularly as one can spend a life time doing that. I am really grateful to you and Emma for letting me into your lives. I keep thinking if only we’d shown my Emma how to point to a letter board instead of doing all that ABA therapy, or if only we’d found Soma when she was 3 years old instead of when she was 11, or if only we’d started her typing when she was __________. The common denominator in all of this is “if only…..” Part of the difficulty I have and continue to struggle with is fear. I keep trying to outrun it or out think it. But the truth is fear is so intrinsically tied to autism in my mind, I am slowly unraveling it, but it was a good eight years in the making before I began to question, “What am I so afraid of?” Or so this has been my situation. Knowing you, knowing your Emma, knowing others, now all adults who share my daughter’s neurology is the ONLY thing that has helped me with my fear.
Thank you for writing this post. That sounds like a really wonderful moment for all involved (except perhaps Richard’s back). However I do think that lumping all experts into our homogenous group can be just as problematic as lumping all autistic people into one group as well. Are you sure that there is not a single expert on autism in the world who is also autistic? What about Temple and the others like her who do speak at conferences and write books and help parents understand more about which might be going on with their children? I also think it is a problem to assume that all parents of autistic people are not autistic themselves. I’ve mentioned this once before in reply to one of your posts, but the more I learn about both my daughters who are at very different places on the spectrum, the more I see parallels in both myself and my sister. I have two uncles on the spectrum as well. I feel that it is very much a part of my family genetics to greater and lesser extents in various relatives. And I understand that you had a bad experience with ABA, but a lot of people have very good experiences with therapy programs. Like our family. I worry that telling families they should not do interventions with their kids and that they should take a wait and see approach could encourage families to not find ways that their kids can communicate with them as quickly as they might have otherwise. And isn’t communication key to advocacy, self direction, and at least some measure of independence? Does this concern you at all?
I don’t get the impression that Ariane assumes these things–that some experts or parents are not also autistic. I know that both of us know multiple people who are both of those things.
But overwhelmingly, most of the people who are thought of as autism experts, by the majority of non-autistic society, are not themselves autistic. And there’s a terrible double standard by which non-autistic “experts” are overwhelmingly taken at their word when they talk about what autism really is (Simon Baron-Cohen with his proclamation that we have no empathy, for example), but autistic people “can speak only for themselves,” and can have no consequence for broader discussions of what autism is and how it’s best treated.
There ARE a few noted autism experts who are autistic–Temple Grandin (though I disagree with a lot of what she says), Rudy Simone, Lynne Soraya, Michelle Dawson among them.
The alarmism around the necessity of early intervention is harmful insofar as it scares parents into thinking that intensive intervention is necessary as early as possible *in order to make a child as non-autistic as possible.* But *all* kids need early, constant, and active engagement with the world in order to mature and become educated. Only, in another gross double standard, for non-autistic kids, it’s just called education, for kids to be taught about the world and allowed opportunities for their own discovery. With autistic kids, they call it therapy. Who have you ever heard say that a typically-developing, non-autistic 1 1/2 or 2-year-old needs “early intervention?”
Jen, I appreciate your comment as it has made me realize that others may have misunderstood me as I think you have.
Nowhere did I write that all parents with Autistic offspring are not Autistic themselves. I personally know a number of people who are both.
Nowhere do I say that I recommend parents do nothing once their child is given a diagnosis. Nowhere do I write that parents should “wait and see.” Nowhere.
What I realized as I read your comment is that many may assume that’s what I am suggesting though. So next week I’ll write a post about that. But for now, let me just say, for the record – I do NOT think ANY child should be left to sort things out for themselves, with little or no interaction with anyone. I don’t. And I never have.
Thanks for addressing that. I was not meaning to put words into your mouth. You did refer to the “wait and see” approach in your post and seemed to disregard the idea that one should not wait and see. I wanted to let you know that this was my take-away from the post and many of the follow up comments as well. Personally I know quite a few experts, including Susan Marks who produced Laura Nagle’s great documentary “Vectors of Autism”, and my kids’ own BCBA Dr. Byra, who do know and love many people with autism, have their best interest in mind and work tirelessly to make their lives better. A lot of the experts/advocates/school and clinic founders I know (and know of) are themselves mothers of children with autism who have put themselves into the field because of all that they learned from going through the process with their own children. And looking at the college and graduate students in our own home program who I recruit from the local university myself and pay to have trained both in PRT and DTT in order to work with my kids, I see a group of dedicated, loving, caring women who will be the next generation of autism professionals and I think that is a truly wonderful thing. Several of these young women are going into the field because they have a special needs sibling or uncle or cousin. Their hearts are in the right place and they genuinely want to help. I’d also like to point out that while I am sure that there are amazing autism moms out there who intuitively know what to do with their children without experts telling them or training them in therapy techniques, there are also a lot of us who do not. When my oldest started to regress I was at the start of a very difficult pregnancy that was spent almost entirely between hospitalization and bed rest. By the time she was diagnosed I had an infant who was nursing every 3 hours, I was exhausted, depleted and close to mental breakdown. Our BCBA trained me in DTT and I got training for PRT at SARRC in Phoenix and for the first time since before her regression started I finally gained back confidence about being able to successfully engage my daughter. Before that training I felt defeated, hopeless, and unable to reach her moment to moment throughout our day. I really adore everyone who works with both of my kids now and feel defensive of them and the genuinely good work that they do. I know that there are bad people out there. I know that a lot of people with PhDs aren’t in the field working one on one with clients every day but sit in an office and dictate people’s lives. But there are also a lot of really good people out there working very hard to make a difference in a big way. I just wanted to speak up for them as well. Thank you for letting me do so.
Jen, help me out here and copy and paste the sentence(s) where I am using the words “wait and see” or even suggesting this in the above post. I’d really appreciate it.
I guess that the actual words “wait and see” were in a quote that you referred to: “I can’t stress strongly enough the importance of diving into action immediately. Every expert in the field agrees that early intervention is essential and critical. The “wait and see” approach is detrimental to your child.” ~ Lynn Koegel and Claire LaZebnik
The above quote followed a section in which you referred to the misinformation you were given after diagnosis: “Because with all the misinformation we received upon Emma’s diagnosis, one of the implications was that massive amounts of intervention, forced interaction and jumping through a million hoops was more than necessary, it was required if we wanted to see any “progress.” It was suggested that if we didn’t do all these things, we might as well resign ourselves to the idea that our child would never move beyond where she currently was.”
The negative tone in which you refer to interventions and to people who think that ‘wait and see’ is detrimental, suggests that you are not a fan and it sounds to me when reading your post that you do not think that they are ‘necessary’ and should not be ‘required’. Am I misreading you?
I apologize if I am. I am not a hater. I am a genuine fan of your blog and have read many other blogs and books (most recently ‘I am Intelligent’) because of your recommendation. I guess one question after reading this and all of the other comments and your replies to them is: What do you recommend parents of newly diagnosed children do instead of ABA and other interventions overseen by the “experts” you seem to distain? Particularly if they are not parents who feel that they can tackle all of the issues of autism on their own.
Hi Jen, I’ve written a post this morning addressing some of this. I think the things you are reading as “disdain” are in fact things I just feel so incredibly frustrated with.
I was speaking to my husband about criticism and how easy it is to criticize things, but to offer a solution or an alternative is far more complicated. I don’t particularly love hearing endless criticism without any thought to what might make things better or how to change the existing situation. I have never felt criticizing for the sake of criticizing was particularly helpful. I really do appreciate your words here.
PS I never thought you were a “hater”! 🙂
“Can you imagine that when women spoke up or suggested these views were in direct contrast to what they, as women, lived on a daily basis, these male “experts” ignored them or suggested they couldn’t possibly know what they were talking about because women couldn’t be relied upon to make sense of such things?”
And to extend this totally appropriate analogy… If, when women contradicted experts about what they really needed to live full and sustainable lives, or what kinds of therapies and resources would or wouldn’t help them them, they got told repeated that they were *obviously not real women,* or *obviously only very mildly affected women,* because *real* women, by definition, suffer terribly from being women. So a woman who isn’t suffering terribly or doesn’t wish to be cured of womanhood, has no place in a conversation about treatment of real women, who by definition do.
As you are well aware of and experiencing…you and Richard and Emma, is the theory/observation Jenn has mentioned and talked about many times before…is the peeling of the onion…Emma, now that she is communicating both typing and verbal, is allowing the “onion core” to keep pushing to the surface as the skin of the onion is pulling away for this emergence to keep happening. It is truly a beautiful process and a blessing all at the same time! Thankfully, it continues with no limits!
It really is!
I posted this on Lynne Soraya’s Facebook page in reference to your blog sorry for the redundancy…The “experts” I’ve talked to couldn’t give me an idea of what their plan was and what they were attempting to accomplish and when. So far, NO one that I’ve consulted knows more than me about Autism, and anxiety and its affect on my daughter’s social issues. Its very difficult for me to justify spending so much money out of pocket because insurance covers none of it if the person providing the therapy is less knowledgeable than myself about what they are trying to “fix”. I’m not sure if she ever got anything out of social skills training or the couple of therapy sessions that she has had. Frankly, the public school’s OT/PT/speech language folks have provided WAY more effective therapy than any PhD in private practice.
My Mini V is 6 now and will be entering 1st grade in September. When he was just under 2 and a half is when we began really wondering if he might have autism and putting the little things together into the ‘big diagnosis’ which he got later. Just after two and a half he was labeled significantly developmentally delayed and accepted into Early Intervention. Starting at age 3 they began the autism evaluation which took them three months. I was impatient during this time because at this point, all I had to go by is what I had read online (he didn’t have a regular pediatrician) and all that I was reading is that I needed to get him into therapy as quickly as possible. But I couldn’t do that without the autistic label. State medicaid wouldn’t cover it without a legitimate medical need.
So in June of 2010 he was finally given an educational label of ASD, but it took nearly another year before I was able to get him in for a medical evaluation. He was having minor intervention at preschool (something like 4 hours of OT per year and 6 hours of speech per year.) When he finally had the medical diagnosis, and his name came up on the waiting list, I was hopeful and temporarily less stressed thinking things were finally going to start to improve. Although they already had improved by my teaching him sign language and giving him the means to communicate his needs and wants to me, I just didn’t see it yet and I was falling into that parent of a newly diagnosed child trap and looking to ‘make him normal’ simply because I thought that’s what I was supposed to do.
When his name finally came up for OT, we began going to sessions. No car meant taking the bus and we had to leave the house at 7am and many times didn’t get home until 5pm. Even at 4 years old, my Mini V had the amazing ability to control his bladder and bowels. If he was wearing pants, he held everything, but he was not (still isn’t fully) potty trained). For such a little guy that was a really long time to hold it. Not to mention the stress of getting up so early and being gone so long was taking a toll on me and my partner, who is also disabled and relies on me to make sure his basic needs are met (he is unable to eat if someone doesn’t fix him food.) That combined with them switching his therapy providers four times in the three months we were there and setting my Mini V back to square one with each switch, just all combined to make it not a pleasant experience for any of us. So we stopped going to therapy. He still got some small amounts of intervention at preschool and last year in kindergarten, but it wasn’t as frequent as when we were going every week. My son has progressed on his own and the past year he has completely blossomed. Being with neuronormal peers has helped him a lot. He still occasionally will have some pronoun reversal but I know what he’s saying when he does that. He will always have sensory issues and become overwhelmed, but we work with it. Once we get a car, grocery shopping will be so much nicer for both of us I think.
My point? Just like you, I have come to realize the truth in the statement that autism is developmental delay, not stasis. All those fancy interventions really aren’t needed. A parent who loves their child can do a better job then probably 85 to 90% of therapists out there. The secret is love and acceptance. Your child may have autism, but they are still a child and need love, acceptance and support. Autism isn’t a death sentence, or a tragedy, unless a parent makes it one and then it is on the head of the parent. (Sorry this is so long, if it’s too much, please feel free to delete it.)
So good!
I am working on a post that can go with this one. Not the same thing, but similar idea.
Looking forward to reading it, Amy!
Excellent post! Will share this with every autism “professional” I know.
Wonderful post, Ariane! Thank you so much.
I am glad we did not jump on the “early intervention” bandwagon. It was pure fear and alarmism. The the very brief bit of “intervention” we did when our kiddo was four did more harm than good. And I will say it loud and clear: ABA did harm. We regret listening to the “you have to do something” sentiment of others; as if we were not doing anything in teaching her and working with her ourselves, you know parenting!
What is frustrating now, is when our kiddo does something wonderful, like your Emma’s question, it is not celebrated by others. So few people understand the significance of these stages of growth for our kids, and the “expert” opinion is always whatever we do now, “well she would have been more ahead with early intervention.” That is pure BS!
Human beings learn all of our lives; we can. We have the potential to. The focus on “early intervention” only leads to lowered expectation for children once they are past a certain age. The “oh well, we’ve missed the chance.” I remember this from teaching. Teachers constantly complained that kids can’t read, so they give up on teaching them to read. As if it is somehow too late at grade 3, or 8, or 10 to teach reading. My grandmother learned to read and write in her 60s. My kiddo is 5 and she will continue to grow and learn and develop.
The focus should be on continued teaching and development and high expectations, like with all children. What my girl doesn’t do today, we’ll try again in a week, or month, or year. In her own time.
Happy thoughts to you, Ariane, and thanks for this post.
Thanks so much D. Good to hear your thoughts and experience on all of this.
This is beautiful. We feel the same way about our Tyoma. He has been making some amazing progress over the summer. It feels good to appreciate the moment as a part of his natural progress in life. I feel like you and I are holding hands as our children grow. Thank you!
*holds out hand* 💕
As an example, I would like to note a child I worked with for 3 years. He was 5 , nonverbal, very violent, not potty trained and not enrolled in school. He was fed, clothed, and loved, but his had 6 o ther kids, no money, little education and had no idea what to do with him. People on state assistance dont get referrals to specialists often, and so he was allowed to sit in a corner and play with a bike chain for 8 hours a day because it made him happy. Before you think this is horrible, it is normal for families living in deep poverty.
After 6 months of me working with him daily, he was potty trained, using PECS for simple requests, and was able to go 6 weeks without causing a significant injury to someone else.
That was not normal maturation, it was the direct result of intervention and good, caring therapy.
I was able to help the mom learn to help him and that was the goal. He continues to make progress and I am extremely proud of him and his family.
I do not view my role as being superfluous in these cases, and my help was indeed needed and necessary. It pains me to be viewed as not being supportive of autists or their families, or derided as some sort of snake oil salesman when I know that the dozens of marginalized families I have helped who have children with autism, would be the first to tell you differently.
Yikes. My first comment did not post , so it seems to render my last one apropos of nothing!
My point is that some families and children do need a therapist, and indeed it can be crucial for the children I work with who live well under the poverty line, and who’s parents are not aware or able to advocate for them.
For the record, I have never had a child run away or scream when I arrive….it is usually qute the opposite. I design a program for each individual child using a variety of methods and teach as organically as possible. I educate, listen, and help set realistic goals that without a doubt improve a childcs life, or I wouldnt be doing this.
Some families are equipped to get along just fine without any intervention, and some need it desperately. We need to support the whole range of options available and tailor them to the specific needs of the children and their families. No good therapist or doctor should tell you otherwise.
The comments on this post seem to be getting messed up. Not sure what is going on as someone else wrote me that their comment never went through at all. I have not been responding to the comments on this post as I haven’t had time to give the kind of thoughtful replies I would like to. But I saw a comment on the post from the day before this one, “A Recipe for a Good Life” in response to Carly’s where you talk about being a therapist. Did you mean for it to be published here instead? If so, you could copy and paste and add here and I can leave them both or delete the other, whatever you prefer. I am going to try and get to some of these comments with replies in another few days. Really appreciate hearing from you!
Oh yes I must have messed up! My computer is dead and I am useless on my new phone! If I ever figure out how to copy and paste with it, I will do so….as it is I can barely type!
Just hoping to give a different perspective from where I sit as a provider for Medicare to a demographic that many people ignore.
Michele – really appreciate your comments here. Thank you for talking about all of this from your perspective.
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.
I did it! Now please excuse the garbled order and hopefully it will all make some sense.
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.
Michele, I really appreciate your taking the time to write about your experiences as a therapist providing individualized care for the children and families you work with.
To clarify… as I wrote in response to Jen’s comment, nowhere do I suggest parents do nothing. Nowhere. What I do say, what I have said, is that had I known then what I know now, we would have done everything differently. We would NOT have done ABA or the ABA based SLP either. However that does not mean I recommend parents do nothing or that they should not receive help and support.
I really object to the alarmist language used when discussing autism and an autism diagnosis. Language that instills terror in parents and the feeling that all maternal instincts are useless in the face of an Autistic child because “therapy” trumps all else. I actually had a therapist say to me that my child didn’t need affection, she needed therapy. This was our experience. It was an unfortunate one. Sadly our story is not the only one out there. There are a great many. I hear them often and far worse than ours.
It’s always good to hear from those who are working in the field who do not say and do the things we witnessed and experienced.
I didnt think that anyone was saying no therapy ever….just saying that in my topsy turvy world, that the parents are the ones doing the abusing and neglecting, and the therapists are the ones rushing in to save the kids.
Weird and sad.
The concept of early intervention is becoming an overwhelming, all encompassing, smothering system of fear and pushiness. As someone who specializes in the 0-3 age range, I am frequently embarrassed and appalled by the things other therapists and professionals will say to families with such tiny little people. To hear that your 18 month old needs to start sitting in a chair IMMEDIATELY or else he will not be a successful child (whatever that means), is just beyond absurd…it’s almost unethical.
There must be some sense of reality in therapy. The only expert is the parent/caregiver. We as pediatric professionals may be “experts” in what we know about our field, but we are not the expert of any child but our own. There is a line between providing information/education, and using fear tactics to scare families into thinking if they don’t do 40 hours per week of ABA, etc. they are failing their child.
I agree 100% with you. Each child, regardless of diagnosis is an individual first. I see early intervention as a guidance tool, but I have gotten quite verbal when anyone assumes they know better than I do what is best for my child just because they have worked with x number of other kids who have xy or z.
Melanie – really appreciate your comment. This idea that has taken hold, that if we (as parents) do not immediately do x, y and z while implementing a rigorous intervention, are negligent parents, is beyond hurtful. Telling parents that if they do not do something or else their child has little hope, or saying the more benign, though equally threatening, line about how essential early intervention is, how that window of neurological development closes within the first five years of life etc and that so and so has a kid who is mainstreamed (implying that your child will be too) is also horrible to say the least. There are a great many parents who have NOT had a child make the kind of massive “headway” reported by others and they have done ALL the interventions recommended and much, much more. Those parents often feel they must have done something wrong, and those who couldn’t afford to do the 40 hours then blame themselves that if only they’d had the resources their kid would be mainstreamed too… all of this sets up a situation of parents believing that “recovery” is possible if they just had the means to provide what ever it is being promised to their child.
Wouldn’t all of us benefit from the idea that an Autistic child has a different operating system than one who is non autistic and let’s find out all we can about what our child’s system will respond best to and implement that? If we parents were educated as to the various modes of alternate communication and we were helped to find the one that best fit our child, wouldn’t that be a far better use of our resources than the current system, insisting that every child talk, every child respond by looking us in our eyes, every child behave in a way that does not take into account their specific neurology? There are assets to their neurology that are being completely ignored and discounted as unimportant. This, too, needs to change.
Yeah it is a bit odd that none of the Autism “experts” know an Autistic outside of a clinical setting thankfully there are no Cerebral Palsy experts otherwise they would be making claims about me that they can’t back up.
Exactly Alice!! So glad you are speaking up for your child!
I remember distinctly my daughter saying, “There’s Daddy!” one day from the car window. It was the first time she verbally recognized him. I will never forget it. It gave me hope. Even though she is on the Asperger’s level, we have worked hard and she had progressed wonderfully.
Very Interesting! Thanks
Establishing a connection is the most important thing a therapist can do with any child. This requires respect, space, intuition, the ability to read very subtle cues, and living in the moment. I have always hated doing hand over hand. If hand over hand is needed, then there is something wrong with the therapeutic activity. It is either not interesting to the child, not developmentally appropriate, not a skill they need to learn, or is aversive in some way. I have had parents and others in the educational setting become very upset with me because they don’t see me “make” the child “do” what they are “supposed” to do. I had a mom tell me that she wanted a different therapist because I didn’t make her child cry like her other therapist did, and therefore, I couldn’t be making any progress. Time and again, the parents whose child I serve are told by local “experts” that they are not doing enough for their child because they don’t drive them an hour 9 times a week for the additional therapies that are recommended. Thank you for writing about acceptance, about time, about being perceptive, about being patient, about working with the child at the child’s pace, about allowing for growth, and about seeing each child through the eyes of love.
Marcia, I’ll just add that sometimes physical support for those who require it is needed, but it must be done with care, respect and with the other person’s permission. The other thing I want to add to your lovely comment is that seeing my daughter as a human being with equal rights and not as “less than” has been crucial. She is not inferior. It is up to me to help her with the same patience, compassion and love that she extends to me.
Parents are the true “experts” on their child … While I appreciate the intentions of people with lots of letters behind their names, I never expect them to understand what it’s like to be anybody else but themselves. True for all of us. So I accept their information, process it and apply what seems to fit for our family’s circumstances right now (subject to change at any time).
As I once said the a well-meaning but totally self-absorbed school psychologist who was throwing around labels to make her case, “ASD means little more to me than B-O-Y.” I could see her wheels spinning as she tried to figure out what that acronym was. After a brief pause, I continued “… it tells us which washroom he should use. Now, let’s talk about my son.”
Beware the false prophets!
Thanks Scott. I would just add that my daughter is actually the “expert” and it is she who has helped guide me so that I can be a better parent to her, far more than anyone else.