Do you want to know you’re not alone in your journey diagnosing autism? Do you want someone to talk to, someone who understands even just a little bit of what you are going through? Do you just want more information on autism such as what it is, teaching someone who is autistic, or dealing with daily life? Then welcome to you, and welcome to those who are just interested in reading about our journey and the struggles that we go through daily. We hope that this site can give you some insight into what autism is and what it is like in the journey of diagnosing autism.
I have created this page for a few reasons. The first reason being for information on what autism is and the options available for diagnosing it, the second is to get our story out there because I want others know they’re not alone in their journey, and the third reason is for those who need it, so they can have a support system and/or just a sounding board to have their frustrations heard. I have learned that having something as simple as someone listening to your concerns is sometimes hard to find especially when you have a child who is (or might be) higher functioning autistic. It can be even more difficult when that child is a girl. This is page is about our story, what we’ve been through thus far, and what lies ahead for us.
In 2012 I had two perfectly beautiful little girls. We counted fingers and toes and they were all there; everything seemed to be great with them. They grew normally and were relatively meeting all their milestones, especially for twins, until one day they weren’t. We didn’t know why or even what to do. We discussed our concerns with their pediatrician, but he seemed to think that they would be fine and said that eventually they would catch back up… They never did. We went home feeling a little better, but when they started falling further behind we decided that we were going to get another opinion. We knew something needed to be done quick before they fell too far behind. This doctor told me not to worry, and that they were perfectly healthy. Unfortunately, we realized rather quickly, this seemed to be the common agreement among the doctors we saw, but we refused to quit trying and we were determined to find someone to take us seriously.
We moved to another county towards the middle of 2015 and finally found exactly what we were looking for. The doctor we saw this time seemed to agree with us, and we thought that something was finally going to be done about it. Again, we started hitting brick wall after brick wall. We were referred to a speech therapist who recommended we put them into a preschool type program to help them “come out of their shell,” this was after she ran her tests and found that at three-and-a-half-years-old they were functioning at a two-year-old level. We found out later that they also had problems with wax build-up in their ears. Even though they could hear just fine, no one would help us further because they couldn’t determine whether their speech delay was due to the build-up.
We were then referred to another agency to have an assessment done, but were rejected four different times because “there wasn’t enough evidence that they were autistic.” This is how is went for about a year until we met someone who went through the same problems. She recommended we ask our pediatrician about something called genetics testing. After further research we decided to ask the pediatrician. We felt we had tried everything else, so we felt that we got lucky. Our pediatrician agreed that it was the right call, and shortly thereafter we were called to set up the appointment. Now we’re waiting, as patiently as possible, for the day to arrive. I will blog our good days, our bad days, and anything new that happens in-between.
I hope this site helps anyone who may need it, even if it is just support. I wish I had something like this when we were struggling early on. I hope that our story, our journey, can help others out there, those who feel like they aren’t getting the help or the answers they need. Good luck to you in your journey.