Acceptance of Autism in my daughter

[Sharyne]

We have been on a long journey since Millie's 2nd birthday in 2007. I had expressed concerns about her development to her pediatrician, and he blew me off saying that she would "grow out of it" and "catch up later." I continued to be concerned, finding even the most basic of things (teaching Millie to feed herself with a utensil) difficult. A family friend, who is an ENT resident at a local university hospital, took my husband aside in early June 2008 and expressed his concerns that Millie was showing signs of having Autism Spectrum Disorder. He is involved in screening of children with developmental delays and has a cousin with ASD. While it was very hard to hear that my daughter may not be normal, at least someone with some authority on the subject was finally acknowledging that I was not crazy for thinking my daughter was not developing normally. I did not want to say that my daughter is autistic, I have fought that idea for the last 9 months. I wanted some other explanation, visions of Rain Man dancing in my head. Autism seemed like such a hopeless and unpleasant diagnosis. One of the worst things you can do to me is ignore me, and if my daughter is autistic that meant that she might do this very thing to me. Well, we contacted First Steps that June for an evaluation and also spoke to a speech pathologist friend of the Dr who alerted us to the possibility of autism. Through working with a very good Occupational Therapist, we discovered that Millie definitely has Sensory Processing Disorder/Sensory Integration Disfunction. She is very low arousal and has major auditory processing issues.
Just before Millie aged out of First Steps we finally got a hearing test. She failed the hearing test and we went to the pediatrician to clear the earwax the audiologist saw in her ears. The ear wax was so thick and so impacted, that pediatrician appointment was one of the most traumatic experiences we have had to date. When Millie's hearing was retested, she showed greatly improved hearing (she had been at 58 db in the left ear before cleaning the wax out and now was at 33 db in the left ear, right ear was hovering around 25 db). The audiologist decided to go ahead with hearing aids to "highlight" the auditory sense for Millie to encourage her to use her ears and not be so visually dependent. She had seen hearing aids help other children with auditory processing problems. Millie wore the hearing aids for about 2 months, showing greatly improved eye-contact and attention. Then she started to remove the hearing aids, putting them in her mouth or throwing them. She eventually lost one at school. When we went to replace it and discuss the problems she was having with keeping them in (she had been really good about keeping them in at first), the audiologist decided to retest her hearing. She came back with a normal hearing range! We elected to stop wearing the hearing aids and see how she did, re-evaluating in a few months. By the time that appointment rolled round, I had stepped up Millie's private occupational therapy to twice a week (1 hour sessions), with speech therapy twice a week (30-45 minutes each) and physical therapy once a week (30-45 minute session). I completely forgot the appointment and have yet to reschedule.
We started Millie in Early Start right after her third birthday, and she qualified to receive speech, OT and PT in the school. Part of the process of enrollment involved a vision test and a physical. The vision test was ROUGH, she had a very hard time cooperating with the various tests. The ophthalmologist was uncertain of the accuracy of her tests, which showed no vision problems. She was most concerned about Millie's visual acuity. I need to get her into a pediatric ophthalmologist. I have yet to get that appointment made. She seems to have a lazy eye as well.
In doing some research and doing some surveys/questionaires it has become clear that Millie is autistic. She failed the M-CHAT twice, I tried it before she turned 3 and in the last month. My husband and I also took the Aspie quiz online, he turns out to be a probable Asperger's diagnosis. I show up as neuro-typical. Both my husband and his father show definite autistic behavior. Oddly enough, it is a relief to think it is not my fault Millie is autistic. I had feared my hormonal issues caused them. I had read that there is a theory out that autism is basically an extreme form of the male brain and thus might be caused by abnormal levels of testosterone in the mother during pregnancy. I suppose that could still be part of the picture, but the hereditary link is stronger on my husband's side. Millie's speech therapist has been the most confident and most consistent in saying that Millie is on the spectrum. I have not wanted to admit it, it seemed to bad. But I have, in the last 2 weeks, come to the conclusion that my denying it will not make it not true. She is autistic. We have finally gotten a referral to Weisskopf Center and filled out the application paperwork. Hopefully she will get an appointment for sometime soon, preferably before next school year. We will then get the official diagnosis. I don't think I really need a doctor to say she is on the spectrum for me to know that she is on the spectrum. Having the diagnosis just increases the amount of therapy we have access to. I am also hoping to get disability benefits for her to pay for things like swimming lessons, sports and hippo-therapy.