“I can’t count the number of books, articles, websites, studies, etc. I have devoured on the subject of motor speech disorders, autism spectrum disorders, treatment methods, and anything remotely associated with the subject.” ~Lindsey
My son Quinn’s initial official diagnosis was PDD-NOS (today known as ASD) Other dx considered at the time: -Global Developmental Disability (In Canada, “Developmental” Delay/disorder is considered cognitive, or intellectual i.e. mentally disabled). -anxiety disorder -obsessive-compulsive disorder At no time, was a speech disorder considered. My husband and I accepted the dx at the time because we thought we may be in denial. But I just knew at the time it wasn’t accurate in my gut. Moms – you know what I mean right?
My son at 2 and a half, had a lot of “classic” traits of an ASD. ( most alarming… lack of speech.) His SLP commented that he was a very angry little man. Some “classic” characteristics of an autism spectrum disorder that were exhibited other than lack of speech: lack of social communication attempts. repetitive type play. Consisted of lining things up. His favorite book to read was the phone book (no kidding) – he would sit for extended periods, just flipping the pages, fingers turning black from the newsprint type paper – interrupt him mid-task, and look out!
Quinn was very rigid in things being done the way he wanted them done. He refused to be comforted by us when upset – went stiff and cried harder if we tried to touch him. We would be banished from the room until he calmed down. Again with the “compliance” issues. Had his own agenda – didn’t much care if he pleased anyone else. In addition to lining things up and repetitive behaviors, he was uncomfortable interacting with strangers, had a preoccupation with cars, had a rigidity about how certain things had to be done, However, once he received appropriate speech therapy for his oral motor planning issues, started fish oils, and began to be understood by us, the traits dropped off and then disappeared.
We believe that they were a result of his intense frustration at not being able to communicate with his obviously stupid parents (lol)… a coping mechanism. This was the clue for us that he was misdiagnosed, in addition to the fact that he really didn’t test very well, so the data the examiners were using to apply the dx of ASD was inaccurate, however, being a standardized testing method that looks at checkmarks on a page instead of at the actual child, the data put him on the spectrum. Who is to blame? Nobody really – he sure looked like he had an ASD. Autism dx isn’t always black and white…. it’s not like you can do a blood test and you get a positive or negative result.
We fought very hard to have the dx of PDD-NOS removed, not because of fears of the dx itself, but because it took us down a different therapy road than what he needed for his speech disorder. The only form of speech therapy offered through the PDD road was social communication, which is great, but in no way addressed his speech disorder. Our son carrying the PDD-NOS dx was ineligible to even be placed on wait lists for organizations like the Speech Foundation (a specialized oral motor speech organization here in Ontario), so he was really cut off from that path. It was obvious it was a misdiagnosis. He got a lot of therapy through his ASD diagnosis, but more isn’t better if it isn’t what your child needs. There was no progress with the therapy for autism.
Is was a terribly difficult experience when my son was misdiagnosed on the autism spectrum where the accurate dx was apraxia. This is why I feel it is important to have an accurate “label”‘ A label is a great thing to get services, however, if it isn’t the appropriate label, chances are, you aren’t getting the appropriate services. (Obviously, this is a generalized statement and won’t apply to every situation, but it certainly applied to ours). One parent I had corresponded with called it “UDD-FOS”, which stood for “Uknown Diagnosis, Doctor, Full of S**t”.
I guess my point is that you are your child’s best and only advocate, and this applies in the dx stage as well. If you don’t agree with something, do your research, and holler about it – they may be the experts in their field, but don’t forget that YOU are the expert on your child – if it doesn’t sound right, you are going to be the one who feels it in your gut. That’s why group lists like the Cherab Foundation support groups are so wonderful – they give you the information, and the discussion forum to bounce ideas off other parents, to reinforce what your gut is saying. adding to the small book here, and I could really write one on our experience – like I say – it’s been a long road! LOL! I’ve corresponded with a few mom’s who had kids where there was a misdiagnosis of an autism spectrum disorder that was, in fact, a form of apraxia.
This is my understanding of things (in Mom opinion only): It is possible to have autism, and apraxia together, but not all children with an ASD have apraxia. I was told there is a real prevalence of motor planning issues in ASD however. Apraxia sometimes looks very much like an ASD, so you need a pretty good multidisciplinary team to assess your child in order to make a differential diagnosis.
Remember that strong will I spoke of? Well, Quinn was so frustrated that he couldn’t talk, and there was so much in his very clever little head that he wanted to say, that he exhibited lots of behaviors. (the fact that his parents were too stupid to understand what he was trying to say with his grunts didn’t help with his frustration!!)
Don’t get me wrong, there was nothing “easy” immediately after starting with speech therapy, but once Quinn realized that we were trying to help him, and we gave him some tools to communicate with us, the behaviors mentioned above started to drop off. Once Quinn reached the point of being understood by us approx. 70% of the time, the behaviors completely disappeared. I believe the EFA’s certainly contributed to the improvement and still supplement with them.
We believe that all these “ASD” behaviors were “coping mechanisms” for his frustration. Ways to self-calm. also resulting from some of his mild sensory issues and motor delays. All of the social and motor issues were “tidied up” with the other therapies we talked about, and also helped with the addition of EFA supplementation. We believe he was misdiagnosed. Had we not gone down the intense speech therapy road initially, who knows what may have happened. I would like to say that parents should trust their instincts since they are more often than not right. We encountered a lot of professionals that didn’t listen to us because we were mere parents – so I wrote the following article about my frustrations
PhD Mom
I am not an SLP, an OT, or a Ph.D. I am not a medical professional of any kind. I have never received any medical training or education. What I am is Mom to Quinn and Emma, and I wear this title with more pride than any I could possibly have received through years of intense training. My kids are quite simply my greatest accomplishment, and I live now to see them achieve rather than to reach any further accomplishments of my own. Funny how perspective on life changes isn’t it?
I know my kids more intimately than anyone else in my life. I can tell what’s going on with them from an expression on their face, a body position, or a catch in their voices. I am in tune with them due to my emotional connection in a way that no clinical training or education could possibly duplicate. I am without a doubt, an expert on my children…. Therefore, going forward, may I please be referred to by title as Lindsay Wheaton, Ph.D. (MOM)? Perhaps the people I have dealt with in the past who were trying to help my son Quinn would have taken me more seriously when I provided my input. After all… I am the expert in the field of “Quinn studies (with a double major in Emma studies!)” right?
To give you a taste of what I’m talking about, I’ve actually had professionals say straight out to me the following:
“Humor me…. He needs it”
This applied to a visual schedule as the individual felt since he was placed on the autism spectrum that he had difficulty with a change to a daily routine. When I explained that I wanted to focus on another area of difficulty other than this because not only did he not have a problem with a change in routine, but in fact craved a shake up of things as he bored easily, I got this response.
“Apraxia? No… his lack of speech is just a characteristic of his autism”
This was offensive and contrary to everything I had learned on so many levels that I don’t have room to comment fully so won’t bother. however, comment to the individual who said it, alas, was not taken seriously.
“he could suffer from Anxiety Disorder or Obsessive Compulsive Disorder”
Brought on by Quinn constantly picking up a car and saying “caaa” when asked a question. I knew very well that Quinn couldn’t verbally answer due to the motor speech difficulty, and so was trying to communicate socially with the individual by delivering the only word he had that was intelligible at the time. He still does this to me…. If I ask him a question he’s having difficulty with, he changes the subject, however, so does my husband when I ask him a question he doesn’t want to deal with. “Buying time” could very well be a genetically pre-dispositioned trait on the male side of our family…but I think not.
“Quinn has compliance issues and follows his own agenda”.
Ummm. Okay – true from your perspective, but just because he is bored with your standardized test and doesn’t want to do it anymore after he’s already sat patiently while you took his history from me for an hour and a half doesn’t mean that not following your agenda is necessarily abnormal.
Can I please have my title now?
I’ve had good and bad scenarios in the past three years where I’ve been both dismissed as a mere parent, and where I’ve been embraced for my specific knowledge. Don’t get me wrong – I’ve got a lot of wonderful things to say about a lot of professionals that have come in and out of our lives and without them, Quinn wouldn’t be the success story he is today. Perhaps this makes the well-meaning ones who dismissed me stand out more as a result.
I hope this article comes off more as a plea than a rant, as I am not attempting to disparage any of the professionals who have by way of their unquestionable expertise tried to help my son. I don’t feel anyone had any other agenda and felt they were sincere in their perspective and in no way malicious. I just want to provide everyone with another perspective or interpretation to examine: What if we all worked as a team of experts to help the kids, where parent expertise was included and not discounted?
We’ve seen teams of experts, although for the most part on an individual basis. Expert A would refer to Expert B, who would refer to….well, you get the picture right? I think our most successful and most productive assessments or therapy situations happened when we actually had present at the same time, more than one expert putting their heads together and working as a team. The assessment was attended by a multidisciplinary team made up of representatives from Speech Language Pathology, Occupational Therapy, Developmental Psychology, and of course, my husband and I. Our private speech therapy consisted of a team effort as well, which was extremely successful. Either my husband or I attended therapy sessions with Quinn, and we took what we learned and applied it to every day as a form of home therapy. We should be accountable as experts as well – we need to be involved in the work and can’t just dump our kids on the professionals and say “fix them!” With that title, we must accept the responsibility!
It’s amazing to me that we as parents know so much on subjects we may never have taken interest in prior to finding out they impacted our child. I can’t count the number of books, articles, websites, studies, etc. I have devoured on the subject of motor speech disorders, autism spectrum disorders, treatment methods, and anything remotely associated with the subject. I’ve quizzed the experts to clarify issues I didn’t understand. I’m passionate about pursuing the knowledge because it directly impacts my son and his achievements – my whole life purpose after all! This is obviously more than just a passing hobby for our family. Can we at least be considered graduate students of a self-study university on the subject?
I guess my point in all this is that we as parents value the opinion of professionals. We acknowledge their training, their educational experience, their clinical expertise. We need them and trust them and know they sincerely want to help and have the unquestionable expertise to do so. Is it so crazy to ask that they do the same for us in the field of our expertise? Is it insane to welcome us aboard as part of the team, and be treated as such and no less? We want to play and could very well be the secret weapon to success – after all, if our goal is the same, which it is, combining forces would simply make us stronger. Let’s up our odds for the kids emerging as the winners shall
by Lindsay Chase Wheaton Lindsay was a co-founder of Canada’s Apraxia Support Group, ECHO, the Expressive Communication Help Organization
- A Voice For A Teen Who Grew Up With Apraxia
- The True Story Of The Real Life Little Mermaid (the problem of ABA)
- From Struggles With Apraxia To Honors English
- YADA Support Group For Teens And Young Adults With A Speech Impairment
- PhD (Mom)?
- Cherab Support Group/ Apraxia.org