Saturday, November 1, 2014

Autism—Will they see it too?

The day is fast approaching when our youngest son has his second assessment for autism. Honestly, I’m filled with anxiety. It’s making me sick. I find myself wrestling with anger, disappointment and great concern that the second opinion will also be unproductive. I feel it in my heart and in my gut that my son has Asperger’s. Yet the first assessment didn’t see it.

What do I do with that? How can something be so true to me, yet go unseen by a professional?

My husband and I have gone through the entire DSM 5 guidelines for Autism and my son meets every criteria. This process only proved to create more frustration as we questioned how it wasn’t diagnosed the first time.

I’ve read time and time again that Asperger’s, now referred to as autism or ASD, is hard to diagnose in high functioning kids. I’ve read that they’re often misdiagnosed, or simply considered gifted, that is until years later when it becomes more apparent.

How can we avoid this wasted time? How can we get the help he needs today? How can I be sure that on Monday the doctor will see what so many others have seen. From relatives to close friends, even strangers, all have expressed their sense that my son is on the spectrum.

Just this past Sunday I spied on my son after he ran out of service 10 minutes in. I found him where I always find him, he was outside playing video games in his head. As I watched him, I saw his rhymetic pattern, jumping over invisible walls and entering into new levels in his mental “video game”. It was a ritualistic dance, one I now refer to as mental stimming. When my husband approached him my son informed my husband that he was now up to 9,312 points! He was alone, isolated from everyone and was as happy as could be. As I stood there, enjoying his dance, an elder from the church approached me. As an usher, he’s had the pleasure of watching my son play outside every Sunday. Today was the first time he spoke to me. He looked over my shoulder to where my son played and said, “Have you ever seen the TV show Parenthood?” I replied, “Yes, I love that show,” knowing full well where he was headed with his innocent question. He smiled and said, “You know the character Max, the boy with Asperger’s?” With another smile I said, “Yes,” and pointed to my son who was jumping to the next level and said, “does it look familiar?” He only smiled and gave me a look of acknowledgment before he walked away.

This by no means is an indicator that my son is on the spectrum, I have lists of behaviors, 504 plan and interviews with family and teachers to support that, however this simple exchange reminded me that there is something there that people see. It is real, whether or not the doctor sees it, it is real.


16 comments:

  1. It's also within the realm of possibility that your son isn't on the spectrum. Yes, you think he is, and, yes, you want him to get the extra help/understanding a diagnosis would bring, but if he isn't autistic, well, he isn't.

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    1. If he isn't on the spectrum, then I hope they can help me understand how all his behaviors don't add up to it and hope they can point us in the right direction. In the end, we want the truth.

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    2. You’re right, the possibility does exists. I don’t see it, but know that it’s there regardless. I hope I can find peace either way.

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    3. However, if your gut feeling thinks that he is on the spectrum, he certainely is.
      You know your son better than doctors because you live with him in the daily life. A doctor sees him one hour, one hour and a half, which makes such a diagnosis very difficult.

      So, even if doctors are experts in disorders, you are your son's expert.
      It's not because they are doctors and studied for years at university that they know everything.

      Suzanne, I respect your opinion. However, in my experience, doctors often scoff on parents/patients because "they didn't go to medical school, so they are too dumb to understand" when a patient dares making a suggestion or disagree with the doctor's proposition.
      For having BTDT, this attitude from doctors is a recipe for misdiagnosis.
      It's not because these folks are doctors and went to med school that they get the right diagnosis : it's not because a doctor says "this patient is not in the spectrum" means it's necessarily true.
      Doctors have a lot of prejudices against many categories of people, against mothers and against women in general, against fat people, against poor people, against people with disabilities... How many women were diagnosed as "anxious" while the actual issue was a somatic disease ? How many people treated in psychiatry are diagnosed with "psychosomatic complaint" and prescribed a psychotherapy without even proper assessment of the chief complaint ?
      Yes, doctors have knowledge we don't have, but it does not mean we have to take whatever they say as face value. Doctors can and do make mistakes too.

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    4. I think the thing that sticks out to me Giulia is that the previous doctor made his decision only on the behaviors he saw during our appointment, where the DSM clearly states that past behaviors should be taken into account. This does't even address the behaviors that are currently present, but were not seen during the assessment. I don't think the doctor had any ill will towards me, but I do question his final decision since it was made on so little evidence. As Suzanne mentioned, I could be wrong, but it is so hard for me to let go of a gut feeling, especially when it is supported by so many who see him day in and day out. I really hope that if the doctor is in agreement of the first assessment, she can help me better understand it.

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    5. All the best intentions in the world does not immunize against prejudice.
      For anyone, including a doctor.

      So, a doctor can have all the best intentions in the world, it does not immunize him to misdiagnose a patient because of his own prejudice.

      That doctor was stuck in his own belief about what ASD should be rather than the actual science and diagnosis criteria.
      The way he dismissed the past behavior while focusing on how your son presents smells more about his prejudice about disability.
      You should have count how many people say "you are so intelligent that you don't have a disability" when you are twice exceptional. As if intelligence were incompatible with having a disability !

      All the genuinely best intentions don't immunize against misguided prejudice. Not even in the medical field, mind you !

      So, I have no opinion about the first doctor's intentions because I lack elements.
      However, I do strongly think that in his belief system, mothers are overprotective of their children and that children who present well at the appointment cannot have any problem.

      Such prejudice are so perversive that it takes a lot of effort to uncover it, challenge it and change your ways.

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  2. I will be thinking of you on Monday, and hoping you get confirmation of what your heart is already telling you. Keep pushing until your son gets the appropriate supports he needs. My nephew was diagnosed with ADD for several years until the correct diagnosis of Asperger's was reached. (Btw, we are taking said nephew, who is handsome and kind and generous, who graduated from college and now fully supports himself up here in Illinois although his parents retired to Tennessee, out to dinner tomorrow night, with his girlfriend, for his 27th birthday. There is much to look forward to, even with Asperger's in the picture. :)) Hang in, Mama Bear.

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  3. Keep fighting for you son and diagnosis. It will really help him get services that he needs. It was just this last January that our 7 yr old daughter was diagnosed. She had already been diagnosed with ADHD but it was clear that there was more and something was missing with the diagnosis. We kept pushing because they wanted to take the wait and see approach. But, they keep saying earlier intervention is the key. And we saw that with our son who is 9 now but was 2 1/2 when he was diagnosed. It seems the higher functioning they are the harder it is to get the diagnosis especially with the new DSM. Right now we are fighting the school district for more services and to include social skills group because at this point all she has is DIS counseling services. We are also trying to get them to encourage her to participate in group activities instead of letting her always go off on her own. Her teacher this year has been really helpful and sees the issues and has been doing a lot of accommodations on her own. Keep fighting for you son and getting him the correct diagnosis. Because that is the key to opening services. Hang in there and good luck!

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    1. Thank you Michelle, I really appreciate the encouragement. I completely support your position that the sooner we have a diagnosis the better. Already, the 1.5 years since the last assessment, we have come across much more escalating behavior and the impact of that is already done. I would like to prevent what will lay ahead if we don't get help now.

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    2. I am curious Michelle, what finally made them see what you were seeing all along with your daughter? Was it a new doctor or new behaviors, or the fact that she wasn't outgrowing old behaviors? What finally made them make the diagnosis?

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  4. They finally diagnosed her after they saw more behaviors and old ones that weren't going away. It took a new school psychologist coming in that cared to see her more than a strong willed and stubborn child the school had labeled her.It also took 2 huge meltdowns in the classroom where she had to be carried out to the office because the teacher changed the schedule. It took putting her on ADHD medication since that is what the doctor thought but always kept Aspergers in the back of his mind. Her social behaviors became even more obvious like she doesn't get the concept of personal space and she can't pick up on social cues. She even struggles with the obvious cues from classmates. I kept fighting because I knew in my gut that it was more than her trying to cause problems in class or just liking routine like I was being told. I wasn't settling for the label of bad kid when it was obvious to everyone else that it was autism.You know your son the best and he is lucky to have you in his corner.

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  5. She was finally diagnosed when the behaviors didn't get better and some got worse and new ones started. The doctor took a wait and see approach with the thought of Aspergers in the back of his mind. So when the ADHD medication only helped focus and sitting still he knew it was more. Plus the second time that she was evaluated by the school psychologist we had gotten an advocate and she brought in a new person that actually cared about her job and kids. So we went from one psychologist not caring and saying she can make eye contact so she can't possibly be autistic to one seeing the whole picture. She had been labeled a stubborn, disruptive and strong willed child by her kindergarten and 1rst grade teachers. I knew that it was more than that and saw along with others the differences. It took 2 meltdowns that she had to be carried out of the classroom to the office because of a change in the schedule. It should of never gotten to that point because it just further isolated her from her peers. She has no understanding of personal space and she can't pick up on social cues even obvious ones. She gets stuck on the schedule and routine to the point she will keep repeating to the sub that they are doing it wrong and what the schedule is supposed to be. The school and the doctor finally got that it went beyond just a kid liking a schedule. So I just kept fighting and following my gut that there was something more. I had the doctor look at videos and I brought in written things from different people that normally see her and interact with her so the doctor would have the whole picture. Keep following your gut because you know your son better than everyone.

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    1. Thank you so much for sharing Michelle!

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  6. It's amazing when encouragement comes from a place least expected. Especially when it comes to mental illness. Keeping fingers and toes crossed that you heard the answer you've been waiting for =)

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