How Did I Miss This? Seeing the Signs of Autism Spectrum Disorder
August 6th, 2012
By Janeen Herskovitz, MA, Asperger's/ Autism Topic Expert Contributor
I recently read a very poignant, beautifully written piece in the Huffington Post from a dad who discovered his son had high-functioning autism at age 9. The heartfelt article struck a chord in me and stirred up mixed emotions. As a parent there are few things worse than discovering something is “wrong” with your child. Perhaps having to be told about it is indeed worse. Especially after years of not seeing it. My own son was diagnosed at age 3-1/2 years, and I vividly recall agonizing over not making the discovery earlier. So how can parents live so long with a child and miss it?
Late Onset
The majority of parents I see in my office report that their children with autism developed typically until somewhere around 18 months to 2 years of age. My own son fit the same criteria. I recorded each new smile, word and wave bye-bye in his baby book and reported them proudly at each visit to his pediatrician. As a new parent, no one tells you the possibility exists that your child could actually lose skills. The combination of disbelief and confusion causes you to question your own judgment and then hurls you into denial.
Denial
Denial is actually our brain’s way of protecting us from something we cannot emotionally and psychologically handle. It is a stage of grief; but it is not meant to be lived in, just passed through. We don’t usually know we’re in denial until we start coming out of it. That gut level feeling that something is “just not right,” the hindsight of the times your child just couldn’t keep up with the other kids, or make and keep friends. Denial can become your permanent home if you choose not to trust those instincts that something might be wrong.
The Professionals
As a professional who has worked in the field of autism (both as a special educator and now a therapist) I am disheartened to admit that many schools and doctors have missed the mark when it comes to proper diagnosis and treatment. I’m not sure if this is a result of improper training or an unwillingness to be the one who slaps that scarlet letter of an “A-word” on a child, but I suspect it may be a combination of both. A large majority of the professionals I have met who do venture into such territory often don’t have a clue in what direction to send their patients. I’ve heard countless horror stories from parents who were told their child would “outgrow it” or that they had “nothing to worry about.” On the other end of the spectrum, one local doctor even had the nerve to tell a parent to stop saving for college and get a good marriage counselor because “Your kid won’t go to college and you’ll be lucky if you’re still married in 5 years.” Needless to say, I helped them find a new doctor.
Unconditional Love and Acceptance
I often hear parents say, “He was a little quirky, but we wanted him to be comfortable being himself.” or “I know she shouldn’t be doing _______, (insert repetitive or odd behavior here) but she seems to know what she needs, and I think it might be helping her regulate herself.” These parents don’t love their children more than others, they are just focused on helping their child develop into whomever they are supposed to be; without judgment, criticism, or condemnation. Parenting is not about the parents but about what their child needs. Unfortunately, sometimes these beliefs can keep a parent stuck, postponing an inevitable diagnosis. When this state of semi-denial is short-lived, then these parents often channel this emotional energy into the outside-of-the-box thinking that helps kids with autism grow, develop, and thrive.
For more info about the signs and symptoms of Autism Spectrum Disorder, go to www.nationalautismassociation.org.
Related articles:
Surviving and Thriving With Autism: 4 Rules for Sanity
Is it Harder to Mourn an Actual Loss or Loss of an Ideal You Never Had?
©Copyright 2012 by Janeen Herskovitz, MA, EMDR Therapist, therapist in Ponte Vedra Beach, FL. All Rights Reserved.
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I have an autistic son who was not diagnosed until age 7, and I too have had those same feelings of how did we miss this, why didn’t we see what others saw so clearly? And I think that for me and my husband it was a clear case of denial, we didn’t want this to be for our child so we pretended and closed our eyes and it wasn’t a big thing. Until he started school and then is when the reality of his situation hit home with us and we wondered what we could have been doing all this time to help him when really we didn’t do much at all. But it is what it is and we just have to learn to move forward and make the best of what we have today. We are fairly fortunate in that he is still able to function in a regular classroom setting and does some one on one work with the special education team at his school. But we are always left to wonder what if we had done more, could he have progressed further or faster than he has? We try not to best ourselves up about it, but you know, that’s hard when it’s your child.
I’m surprised to read that autism can go unnoticed for so many years..I cannot even say it is lack of knowledge because most parents are qualified but still do not see it ..Denial may just be the number one reason..Also, what are the implications of a delayed diagnosis? Any pointers to new parents to be aware of?
Where are the medical pros in cases like Pam’s? Why weren’t they telling these parents that something is not quite right with the child?
Kate, great question. Early diagnosis has shown to correlate with the most growth and best prognosis. However, I’ve seen children who receive late diagnoses do just as well, depending on the medical care they receive. Due to the spectrum nature of the disorder, there are so many different ways ASD can effect a child (language, motor skills, social skills, immune system…just to name a few) so monitoring and measuring progress is a challenge. The implications for the parents are probably more profound in that they may experience more regret, guilt, and anger. It’s so crucial for these parents to get help for themselves since they will need to be “on top of their game” so to speak in order to get what is needed for their child.
Excellent question, NanaJ. I have wondered that myself. In my experience, both as a mom and a professional, I’ve found most doctors go on what parents tell them. Especially in high-functioning ASD kids, it’s difficult to catch during an occasional well-visit, and if the parent doesn’t mention concerns, the doctor doesn’t address it. The schools also need better training so that teachers can identify these kids who are falling through the cracks. Keep in mind that there are also children who do not even develop symptoms until later in their childhood. I’ve met quite a few who have developed autism after age four due to environmental, chemical or viral assaults on their immune system.
There are parents whom I think know that there is something “different” about their child, but this is the child that they know and love so maybe what the rest of us may view as quirky, they may see as just his personality.
The one thing that I love about parents of many autistic children, though, is that they are the ones who seem to be a little more willing to veer from the traditional and seek out anything and everything that could help their child manage autism. Many times they have been very successful, with efforts currently looking into how diet affects one’s autism and even what sort of classroom settin is best designed to meet an autistic child’s unique needs.
This does not have to be a death sentence, then end of things for the family. This could be the start of something brilliant, just depending on the way that you choose to view it all.
I don’t know, but I have a hard time believing that a parent who is hands on with their child would really be able to overlook the fact that the child has autism, or at least not see that something was going on or amiss. Maybe they are avoiding the issue or burying their heads in the sand, I don’t know. But this seems like it is something pretty serious to just say you didn’t even see the signs.
I have been aware of a large number of symptoms in my 4 yr old granddaughter since she was 2. When I finally raised the issue w/my son (after several family members had approached me with their similar concerns) a chilly wall went up from him for months. I do not want to isolate the parents so I have fun enjoying this grandchild while learning what I can about the syndrome.
For me, it was quite the contrary. I spent 2 years attempting to convince my son’s pediatrician that he had autism. All I heard was “stop worrying”, “your son is too affectionate for autism”, ‘he’s just a late talker”. This included the school board that diagnosed him at age 3 for only speech delay and ignored me when I told them he had autism. I finally took him to Nemours and got him officially diagnosed, thus I was able to seek the necessary intervention that I needed.
As parents, we have to trust our instincts and there’s absolutely nothing to be ashamed of. From day 1, I was never embarrassed to disclose my son’s condition and amazingly, there are people who will think that your child will negatively influence their children; I didn’t have a problem cutting those people out of my life.
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