I wanted to write this post for anyone who has just started on the path to diagnosis, anyone who thinks something might be "off" with their child, and/or someone who has just recently been given a diagnosis. I'm going to do my best to give the play-by-play from start to finish. I don't want anyone to think that if their kid does one or two of these things that they have autism. Kids with autism do the same things that typical kids do, but a lot of the time it is based on frequency and duration of the activity.
Our story started like this. I brought J in for his 15 month well check, explained to the doctor that he wasn't talking. He was making sounds (mostly a ba-ba-ba), but nothing with purpose. I also asked about his pointing, as he would generally just reach his hand out, there was never really a true point, but he would hold his arms up to be picked up. We were given the MCHAT (which is an autism screening tools for toddlers) and he passed (he happened to pass every time that we filled this out, although now I realize that some of it may be subjective. If you are ever concerned and taking this test, be sure to look at the questions as concretely as possible...do not give your child points if he/she does something wishy-washy.). If you showed him a book and asked him, "where's the bird, cat, dog, etc?" he could touch it. We showed the doctor all of this. Conclusion was that he was a boy, our first, and would probably just start talking a little later.
At 20ish months, I made an appointment specifically for a speech consult. The doctor still said that it was probably an issue with the above mentioned things. Start placing objects out of reach, in containers, etc...we had been doing this for awhile and he still wasn't requesting anything. He would just move on to something else...he didn't care. In the end, she agreed that he should be saying at least something and gave us the information for Early Intervention. At this point, you start wading through red tape.
You go to EI and you have to do a developmental assessment where they look at gross motor, fine motor, problem solving, language, and communication. They then tell you what delays they see and start the process of setting you up with preschool-esque classes and speech "consults." Once the delays are identified, you are sent back to the doctor to get referrals for speech (or whatever delays are identified). It seems like much of this could be circumvented with the original speech referral, but I don't even want to get started on that.
After the end of the preschool session, the teachers usually will tell you about every deficit that they see in your child and what evaluations they recommend (this usually consists of speech, OT, PT). This is not a fun thing to experience when you are floating the rive in Egypt (denial) and don't want to hear that anything is wrong with your kid. We went forward with speech...30 minutes of therapy a week until our referral went through. An audiology appointment was also referred, so we had hearing tested and J was cleared on that front. Once we pushed the referral through, we got into private therapy through the children's hospital, and that's where we really started to see some therapy in action. Our EI therapist who also ended up becoming our private therapist suggested that there were some red flags for autism and really pushed us to get him evaluated. I, admittedly resisted, but she brought us into the waiting room and had the receptionist make an appointment for us at the Autism Discovery Institute. The appointment was a month out, but it was on the calendar, so....
The ADI is a pretty amazing place, they do evals, workshops, run a preschool for kids with ASD/typical kids, and they really do a good job of explaining things and pointing you in the right direction. The eval was about 3 hours, you fill out forms and are put in a room with a one way window, where I imagine they observe everything from when you walk until the moment you leave. They are looking at how your child interacts with familiar people and a new environment. After about half an hour of waiting, the child psychologist comes in and starts trying to interact and then moves on to the testing. After about an hour of testing, she leaves the room for another half-ish hour and comes back with results/diagnosis. And a whole new thick packet of paperwork. This paperwork gives the recommendations for therapy, further evals for therapy, resources for support, etc...pretty much anything you would want to know about autism. At this point, we registered J as an EFM in DEERS (military database) and enrolled him in Tricare ECHO, which is essentially supplemental coverage for disabled family members of active duty servicemembers. I will go more into this in another post, as it can all be a bit confusing, but I think it will be helpful for military families reading this to hear it in layman's terms and know the route to go in getting all set up and covered. It is all a little overwhelming. (I also want to throw out there that, by law, the new state is required to accept the old state's IFSP/IEP for military families-again, I will go into that in another post.)
Since we were already in speech, and our current therapist was going to work at a different office, we were given a couple of options, and ended up going with a group session for kids "at-risk" for autism. This provided 2 hours/wk of group therapy, versus 1 hour/wk of individual therapy. Most people prefer the private 1:1 speech, but this was the best decision we made for J. If anyone in San Diego is looking for speech help, I would highly, HIGHLY recommend Ms. Suzie's stepping stones group at Rady. This is where J learned to point, make choices, TALK, and everything was in refreshingly open and honest environment with parents experiencing the same things. We still keep in touch with some of the amazing families that we met there.
About a week later, we met with our Regional Center worker (essentially a branch of EI) and developed an IFSP with therapies to be included in his plan, and goals for what we hoped J would accomplish in that year. Within a couple of weeks, in-home ABA was set up at 12 hours/wk and we were rolling. We scheduled an OT eval and they determined that he was not in need of OT services. We celebrated with a cake pop since it was one less therapy a week that we needed.
As an aside, I want to tell you some of the things I noticed about J developmentally from early...the ASD was always there. J loved fans, there was a running joke that he would sit in a restaurant for hours (and sometimes did - ha!) as long as there were fans to entertain him. We loved to open and close things (doors and cabinets) and would do this for hours if you would let him...he did this so often that we would have to tighten and replace hinges. He loved turning lights on and off...fortunately for us, he's grown out of this and was too short to really do much of this when it was a fascination. As early as 10ish months, we would not walk on grass without shoes, just wouldn't. He freaked out at my in-laws house over a rug they had, he was terrified of it. At about 15 months, in a small music class, he was always on the outskirts, never joining the group or getting excited over the music. He would get down and study the pattern on the outside of a drum instead of playing with it like the other kids. He would get stuck on certain pathways at the park and just go looking down the whole time without watching where he was going (he still does that sometimes, but he's getting better) and if there were strollers, god help us, because he was going after those wheels and he would get down on his stomach and watch them roll. We also had these moments with people in wheelchairs and I guarantee you that it is not fun to explain why he was doing this to their chair. What you should know is that kids with ASD do progress and mature, they don't just stagnate, they just do it at a much slower pace. The best analogy that I've heard is that my kid is running the track at his pace, and the typical kids are lapping him. As these kiddos age, the gap between their skill set and the skill set of their peers widen. For instance, a child with Aspergers is delayed about 1/3 of their age, and a child with PDD-NOS or high-functioning autism might be delayed as much as 1/2 of their age. This puts things in perspective a bit.
It's all a work in progress, but I hope this gives you a better idea of what to expect and I hope if you have friends in this process, that you would (gently) share this information so they might have a little real world guidance in all of this. I am more than happy to talk, help, or offer advice to anyone who is new to it and might be overwhelmed.
