Posts Tagged by Autism Misdiagnosis

Experienced special needs parents will often tell new ones that the most important lesson they will learn will be to follow their gut.  Seek out the knowledge, expertise, and advise of specialists, doctors, and educators, but in the end, you know your child best.  While others may be experts in their fields, you are the expert in your child.  You are the one who lives with your child day in and day out.  You are the one who needs to feel comfortable with each decision you make.

(As an aside, a good specialist, doctor, or educator already knows this and will support you.  A good one will not perceive themselves to be the expert in your child and insinuate that if you would only do something their way, you child would be so much better off.  I remember watching E’s first preschool speech teacher working with all the kids in her classroom.  To me it looked exhausting and I told her so.  I told her how much I appreciated the work she did and I didn’t know how she did it.  She looked me right in the eye and said that what she did paled in comparison to what special needs parents like me do day in and day out.  She said she only worked with these kids three hours a day a few days a week.  Special needs parents live this experience every day of their lives.  She told me she appreciated what I did and knew it was hard and that I was doing a good job.  I left in awe that I had met a specialist who got it!)

When E turned three, I reluctantly allowed her to attend a special education preschool for children with severe speech disorders.  I knew that all of the research on CAS states that one-on-one speech therapy is what a child needs, but I needed to sign the IEP in order for her to begin getting any services.  If I fought the issue, E would not receive any services because there was no old IEP to use as “stay put.”  My husband and I put up a fight and came away with two fifteen minute individual speech sessions a week in addition to the speech classroom.  This was only a quarter of the amount of individual speech therapy E had been receiving prior to turning three.  We were assured that the speech classroom would help E if we just gave it a chance.

So we began sending E twice a week to speech preschool and three times a week to a typical church preschool.  E’s speech therapists were talented and dedicated but at that time not particularly informed about research on best practices for CAS.  (We soon took care of that.)  E regressed, however, because the eight hours a week of speech preschool (essentially group speech therapy) did not equate to the three to five 30-minute individual speech sessions she needed.  After additional IEP meetings, E’s individual speech therapy allotment increased and we settled into the routine of two days a week of speech preschool and three days a week of typical preschool.

E made progress, a lot of progress.  She was doing well at her typical preschool, participating in circle time, and enjoying herself.  My intent has always been for E to be mainstreamed in regular education classrooms.  She was doing well at her typical preschool and now seemed the time to begin.  She certainly continued to need speech therapy and occupational therapy but she functioned quite well in a typical classroom.

As we discussed this issue with the experts, we discovered that the E they saw in speech preschool was not the E we saw at home nor the E her typical preschool teachers saw.  In speech preschool, E was quiet and withdrawn.  She avoided eye contact and did not interact with her peers unless pressed by an adult.  She did not initiate conversations with her peers.  (Although it is interesting to note that nearly all of her “peers” were speech-delayed as well.  She did spend time at recess with typically developing kids but I don’t think twenty minutes a day was enough time to be able to build rapport.)  She did talk to adults but only about topics that interested her.  I’m sure you can see where I am going with this.  In speech preschool, she exhibited autistic characteristics.  In her typical preschool, she did not.

Then and there I decided that we were done with special education preschool.  It was not working for E.  Spending time with children with other delays was not helping her.  She was copying their behaviors rather than building typical ones.  She was around some typical developing children at this school but her speech disorder and the subsequent social delays it caused were stopping her from having typical interactions.   E was doing well in her typical classroom and that was where she was going to spend her time.

In January of this year, E began attending the typical church preschool five days a week.  She still gets individual speech therapy four times a week and occupational therapy twice a week.  I have been very observant of her social interactions at school.  As the specialists are so oft to remind me, her typical preschool teachers only have experience with typical children.  Yet, they didn’t seem to understand that that was exactly what I wanted.  E was receiving speech therapy and occupational therapy from experts.  I wanted her to receive “social therapy” by being around typical children with teachers that would encourage her interactions but also allow here to mature at her own pace.  There was an adult for every two children in her speech classroom.  In her typical preschool, there was one teacher and about seven children.

I watched E through one of the observation windows in the first couple of weeks and spoke to one of her teachers.  It was clear she wanted to play with other children.  She would follow alongside them and wait.   She would look at them and wait, hoping they would include her.  She didn’t know what words to use to enter into their play and so she was an observer and an outsider.  But it was obvious from watching that she was interested, she did want to play with them, she just couldn’t figure out how to break into their play without talking.

Then something amazing happened.  Over the next few weeks and months, E’s play at home began to take off.  She had always been good at pretend but without words.  She could pretend to feed a doll or to make someone dinner with play food but she didn’t use her words to pretend.  Since January she has been coming up with entire scenarios and talking while pretending.  She has toys talk to each other in different voices.  She is able to play imaginatively with S and A.  This developed solely because of attending a high quality typical preschool with typical kids and it happened in a very short period of time.

These last four months have been nothing short of amazing.  E has matured socially by leaps and bounds.  Four months ago she couldn’t figure out how to play with other kids and now we are dealing with her trying to boss them around.  Her preschool teacher told me last week that she was directing all the girls to play princess.  Some of the boys tried to play with them and she told them they could not be princesses because they were boys.  Instead, she instructed them to be puppies.

E talks about her friends at home.  We have give and take conversations with her on topics we choose.  She interacts with the other children at school.  She wants to be their friends.  She talks to them.  E, like many children with CAS, used to prefer to talk to adults because they would be more likely to make the effort to figure out what she was saying.  The speech preschool placement just compounded this problem.  There were adults all around to talk to and the kids all had speech delays or disorders so they couldn’t understand each other.  Because there are fewer adults in her typical preschool, she was forced to interact with children and is thriving because of it.

E is actually catching up socially.  She is maturing faster than normal because she is catching up.  I think her social skills have grown at least a year in just four months.  This is an example of why it’s important for parents to follow their gut.  I knew the speech preschool was no longer the right placement for E.  The special education preschool experts told me otherwise but I believed in my heart that they were wrong and E is now thriving in a regular preschool classroom because I didn’t let them dissuade me from what I knew was right for E.