Imagine my surprise when I opened a bill for my son’s speech and OT and it read approximately $2700! I had received one bill prior to this for $46, which I paid, but of course that payment is not reflected on this bill. When I called the business office I was told that yes, they received that $46 but they didn’t know why it was not applied against this new huge balance. Nor could they answer why I all of sudden got this huge bill. I was referred to their billing specialist that I have been playing phone tag with for weeks. Once I get a hold of the billing specialist and fix what’s wrong there, I get the pleasure of calling our insurance to find out what happened there since we have already met my son’s individual deductible, yet we received this bill and for some added fun we just received a bill for my son’s ear surgery for over $1000. Life isn’t hard enough dealing with life’s obstacles, let alone the obstacles facing a child with autism that I now have to take hours away from him and my family to battle our insurance company. It is hard enough to make ends meet today, how are all the parents of children with special needs surviving? Here is a frightening fact, our family would be better off financially if my husband lost his job! He would have 100% of his time to help with our children, he would get unemployment, we could apply for state medical benefits, and he would be able to access investments at his company that he is not allowed to while being employed! No wonder this country is in trouble and has voted democratic. We are encouraged to be dependent on the government and with a special needs child, how else could you survive. The system is broken and my family and my child are suffering the consequences.
I just posted my last entry today even though I wrote it over two months ago. I meant to come back and finish it but life happened. My son had surgery, our family was hit with two stomach viruses in a month, school play rehearsals, summer camps, dog went missing, started working again and I threw out my back. So, my back is still injured which makes it very hard to manage a very physical child with autism, the dog was never found which has left me with a sadness so deep that sometimes I can’t catch my breath and we have started speech and OT again. The good news is that after my son’s surgery to put in tubes yet again and disintegrate his adenoids, he does seem more attentive and his speech therapist has noticed a drastic improvement. The bad news is, just as I called it, my child has a new OT and he has not clicked with her. He used to love OT and playing in the gym, now he can’t get out of there fast enough. All he wants to do is swing the entire 45 minutes. The only time he perks up is when his speech therapist comes to get him. His new OT seems like a perfectly wonderful person and she has been with the facility for quite some time but for whatever reason my son is not impressed. We have had three sessions and the situation does not seem to be improving. I feel I have to ask to see another therapist because this situation is not helping our son improve. It is common knowledge that changes in routines are deeply upsetting to children with autism, then why does this facility keep reassigning my child to new therapists every couple of months? This brings me back to the support issue. Not one person from this company has offered in suggestions to help during this time of transition. Again, I find myself navigating through this mess alone. One in forty some parents have a child with autism, yet we find ourselves alone. That is a problem.
Much to my dismay, we were just notified that my child is going to get a new OT. This will be our third OT in 5 months. So far my son has done well with these changes but at some point he may not do so well if this keeps happening. Now I have to go through everything yet again with someone new. I asked why this keeps happening and I was told and we have noticed at other facilities there is a high turnover in OTs. I asked why that is and it seems they get burnt out after working with these kids. They get burned out? They get to go home at the end of the day to a home free of screaming, hitting, kicking, flapping, head butting and food spitting. We as parents deal with this 24/7. Maybe I don’t feel so bad now that some days I am so stressed the room starts spinning.
Today’s autism vocabulary word is clinician. I was not familiar with this word until we started the autism evaluation process. Our son was evaluated by a group of clinicians. What is a clinician, you say? Well, apparently a doctor is a clinician but a clinician is not always a doctor. Still confused? Me too. Basically what I can extrapolate from multiple definitions is that a clinician is a person who does business in a clinic versus a research facility. For example, I teach cheerleading and dance classes. Were I to hold one of these classes in a clinic, I must therefore then be a dance and cheer clinician, right? I have searched high and low for a medical doctor to evaluate my son so we can get a second opinion on his diagnosis. I can’t find one. The closest I have come in the University of Minnesota Autism clinic has a pediatric neurologist on staff. I desperately wanted this person to see my son for an evaluation. However, I am told that usually the neurologist only gets involved when a child requires medication. The only person I can find which would seem to be the most qualified to diagnose autism is a neuropsychologist. Our son was evaluated by a psychologist, not a neuropsychologist. Another confusing question, what is a psychologist versus a neuropsychologist? Well, it seems that a ‘clinical’ psychologist is someone that can assess, diagnose and treat psychological and mental health problems. Whereas a neuropsychologist can assess, diagnose and treat psychological disorders associated with brain-based conditions. Autism clearly falls under the latter. After calling multiple autism specialty practices, I have found that almost all of them use a psychologist instead of a neuropsychologist to diagnose autism. For me, that is a problem. Right now, believing in autism is comparable to believing in Jesus and God. I believe in Jesus and God because at a minimum there were eye witness accounts. No one has ever seen autism.
I am 36 years old. My first 31 years were spent in Denver. I remember knowing two autistic children my entire life. I worked with both of them in high school when I was employed in a day care center. These two kids were both non-verbal and both were girls. I gave birth to my first child in Colorado and he doesn’t have autism. In 2011, we made the decision to move to Minnesota.
We had lived in Minnesota for five months when I got pregnant with our second child. I heard the word autism mentioned more times than I can count during my pregnancy. I was so paranoid about it. Why is this such a hot topic here? I was so relieved when we did the pull up test with our son at 6 months and his head did not drop back. I thought we were in the clear. Fast forward 3 years and we have an ASD diagnosis and I am told that it is likely caused by genetic and environmental factors. I will have to get into the genetic stuff another time. That is another can of worms (stay tuned for ‘Now my husband and I both have autism’). It is the environmental part I find intriguing. Why does Minnesota boast some of the highest rates of autism? All the experts keep telling me it is because there is better detection and funding here so more cases are found. I don’t know if I buy that. With a rate of 1 in 42 boys, that is an epidemic. Maybe the state should be spending some of that money in research because that number is startling to me. I definitely feel like there are more people here who want my child to be autistic. Minnesotans have a social etiquette that consists of passive-aggressiveness, indifference and a strong dislike for honest and direct people who go against the status quo. I think spirited children that don’t fit the public education mold are very easily labeled as autistic. All I know is that I have to consider the possibility that Minnesota caused my child’s autism or Minnesota just labeled my child with autism. Either way, it’s Minnesota’s fault.
P.S. The best information I have read about autism is one by Steve Phelps in The Atlantic. It references a book by Steve Silberman called NeuroTribes. The following statement is our new household motto. “Autism advocates coined the term ‘neurotypical’ to label normalcy as a disorder of social obsession and chatty conformity; this playful inversion is a reminder that sometimes people suffer simply by the numerical accident of rarity”.
This is going to sound strange, but a few weeks back I realized I no longer knew the definition of autism. I have probably used the word a thousand times in the past few months but for the life of me could not remember what it actually met. I felt like I was in a scene from ‘Tommy Boy’ when the two get high and start saying that road is a weird word. Ro-ads. Autism, Au-tism. I looked at my husband and asked if he knew the definition, he was also at a loss. I had to google Autism and read the definition. We were so focused on the evaluations, appointments, symptoms, etc., that we forgot what we were even looking for.
I only remembered this today because my son had his first speech and OT session with a private company. As the OT started going over the results of his evaluation, she said she was surprised my son came up ‘normal’ in so many areas and that she thought there was a mistake. Most of the sections pertained to sensory issues. My son has had very few issues in this area. This has been part of the reason we were skeptical about the ASD diagnosis. I mentioned to her about having to look up the definition and she said it doesn’t seem to apply to my son. She then goes on to tell me that sometimes a lack of response to sensory stimulation can be a ‘red flag’ of autism. What? So, you are telling me it is a red flag if the child is affected by sensory stimulation and if they don’t react to stimulation. I am not a doctor, but that just sounds stupid. Again, I am getting angry. To me it seems like this woman is determined to make sure my child fits under this DSM-5 umbrella. The other organization that gave the ASD diagnosis stated he was ‘at risk for ASD’. I asked why they put the term ‘at risk’ in front of the diagnosis. I was told that was because the parent evaluation I completed did not match up with their results. It seems the parent evaluation is weighted heavily in diagnosis. I asked in their opinion, not considering the parent portion, “is my son autistic?” She said he was.
I know we might be going through some denial right now. However, I was very honest in all of the parent evaluations. I really wanted a definitive answer as to what was going on, if anything. I just wonder why not one person from either private organization, the school district, or the support group facilitator has questioned if my son is being diagnosed correctly. There have been several people that have questioned the push for the ASD diagnosis of my son…and they were all medical doctors. When I first mentioned that two pediatricians were not concerned about autism in my son to the school district speech pathologist, she said that pediatricians are not capable of seeing the warning signs because they don’t spend enough time with the kids. Okay, using that same logic, the school district and private organizations have only spent a couple of hours each with my son, why are they so qualified and certain of the diagnosis after such a short amount of time? I am getting a gut feeling about all of this. I don’t know exactly what my gut is trying to tell me, but I know something isn’t right. While I lost focus and forgot what autism even means, isn’t it possible that all these so-called experts are too focused on making my child autistic without considering other possible explanations?
On January 15, 2016, I was told that my son has Autism Spectrum Disorder. I set up all the recommended services and made all the necessary appointments. After that I was lost and that feeling led me to anger. All these specialists and facilities and no one offered me any comfort. All they gave me is a label for my child and some instructions. I couldn’t find emotional support anywhere. So, I decided to put it all out there and made the following announcement on my personal Facebook page.
“I wasn’t sure I wanted to make the following announcement, but after I realized how difficult it has been to find someone to talk to about this, I feel I needed to share in hopes I can find someone else that knows what I am going through.
Last Friday, my husband and I were told that our son had been diagnosed with Autism Spectrum Disorder. I am devastated. I immediately starting asking myself what I did to cause this, will my son have a normal life, how are we going to pay for all of his services? I immediately started searching FB and the internet to find a support group and I was shocked that I really couldn’t find much. I know other people are dealing with this with the updated numbers with rates in boys going from 1 in 68 to 1 in 44, I believe. I finally found a support group across town. I went on Tuesday. After driving for 45 minutes, I was the only one there. It was helpful but again I am wondering, where are the other parents and if they aren’t reaching out for support, where are they getting it from? I would like to have a play date once in a while where I don’t have to explain my son’s behavior. Don’t other parents seek that out? Does anyone know of a local support group? I need help, I am drowning right now. I didn’t want to say anything to anyone but I am not going to hide this and I refuse to be scared or embarrassed about this. My son has autism, there it is, but first he is my son and a very cool kid.”
I have started getting messages from friends offering support and more resources and it is great. However, what I need is someone who knows what it is like to be in my head right now. I need to just let the tears flow. I even called the organization that diagnosed my son (one of the best in the state I am told) and asked about a parent support group. They knew nothing about anything of the sort. What???!!!! 1 in 44 boys and these so-called experts don’t try to help parents connect with other parents! We have an autism cluster school in my district and there isn’t a parent support group! My kid has autism and I am pissed off. I am pissed off that more parents aren’t pissed off and seeking out other pissed off parents! I asked my husband “where are the support groups in a dark, dingy basement with cold coffee and stale donuts where I can cry and scream without judgement?”. I told my husband I was so angry that there isn’t any support that I am creating my own support group and it will have an awesome name like “Autism Can Kiss My Ass”. So, here is the birth of the Autism Can Kiss My Ass Support Group, members 2. Please join us in telling autism it can kiss our asses.