Autism evaluation... questions. (updated with results.)

[Singledad]

Okay, I know I've been MIA a bit, but life got busy. Anyway, my DD is 5 and is in the process of an autism evaluation. The way the clinic here does it, is in three parts. The first one was an hour and a half, and was with a Developmental Pediatrician. That one was some basic observation of DD, and a million questions for me. (DD's history, my history, dd's other parents history etc.)

We did that one already.

The second part is a half day neuropsychological evaluation. We did this part already. They found that she is on the low average side educationally speaking, her attention is not what it should be, she was overly friendly (not socially appropriate) and that she couldn't understand verbal puzzles/riddles. (Ie: "I am round and I bounce, what am I?") she also couldn't be evaluated properly on some tests as she didn't do them correctly/properly.

Now, in about two weeks we will have the final evaluation and I am just.. I am nervous, excited, and worried.

Do I try to prepare my child for the evaluation? I usually always set up her expectations. Yet, isn't this exactly why and what they want to see/test/observe? What happens when I DON'T prepare her for things? When I don't... prepare? and even if she shouldn't be told what is going to go on that day, I still am curious what will be done. I knew for the first two basically what the whole day will be like. the first one I let her know she would be able to play some while I answered a bunch of questions. I prepared her for not knowing what type of toys there are, and that they may have more than one doctor in the room. that they may touch her and listen to her heart and ask her questions and I would like her to try to answer them, even if she doesn't think she is right.

The second I was able to tell her that she would be taking a bunch of school like tests, and I wanted her to try her best, and that it is okay to get it wrong, or to say you don't know. (she doesn't like to get things wrong. She HAS to be right, or she won't say anything.) and I told her about how long it would take (in her terms.. ie: x many times of watching Mickey mouse clubhouse) and such like that. Preparing her.

This time all I know is that "The third step of the assessment is a comprehensive clinic visit, which includes evaluations by a speech and language therapist, an occupational therapist and a behavioral psychologist."

and that we will have a meeting at the end of the day and they will tell me what they think. We will either have a diagnoses, or be told they think it is something else, or they think she is normal and I (and her teacher!) were concerned about nothing. or that she is just sub clinical. (which I think is my fear. that they see what we see, but she is too high functioning to be labeled and get services.)

and I want to know how the day will go for me as the parent. Last one I sat out in the hall/waiting area for the whole time. and helped DD get her sensory breaks/time in during her little breaks between tests.

How did any of you deal with the mixed emotions of evaluation? We are getting closer (Nov 28th.) and I am just... how can I *want* her to be labeled? But how do I make sure she gets services to help her progress if they don't label her? High functioning is great, but I know if she wasn't so I wouldn't be so nervous about this NOT being it.

I do know that I am more happy than not with her neuropsychological results. I wish she was more smart, more like myself (my IQ is in the above average to gifted range.) but I am glad that they saw the memory issue(s) and logic issue (with the puzzles) and that his report stated that DD's OT and aide and special education time (ie: her IEP stuff) is all "critical" for her to continue learning at the same speed as her peers. So, I am hoping that one alone will help keep her IEP in place, but I am not positive. I wish I could be positive. I fear her getting behind. She is average right now, and that is all I can ask for... but I wish she could get some social play type therapy too. try to help her get in the average range in that too. She has made SO MANY strides since horse therapy this summer and the OT... she actually said 'look at what I made' twice now! she SHARED! on her own! NO PROMPTING! She also would go along with the other kids to play.. sure she didn't sustain with their game, but she did start! She even asked about another child! all in the last 4 months. Just... don't know what to think.

Thanks for reading my rant, and if you have any suggestions, tips, hints, or even just a 'I understand' I am thankful in advance!



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posted down below as well as a reply but sticking it here so easy to find.

Today was the final evaluation for autism. He said that they see autistic traits, but they do not see some things they would expect and thus would rather not label her so, and to 'wait and see' about that label, and go forward with addressing their concerns to see if they resolve. (The He is the head doctor, the they is the evaluation team.)

Need to be seen by a child neurologist for her hand tremors. Need to get therapy for her anxiety, focusing on separation. They want the school to do a full speech evaluation and get her in therapy for that. (he mentioned expressive/receptive disorder.) They want OT to start working on gross motor skills as well, as at this point her gross is farther behind than her fine.

They want the teachers/staff to start really observing and commenting on her social skills/interactions, and watching where she is on that, along with watching for more ADHD signs, such as if she is wiggly/out of her seat/etc.

So, to sum it up... they see what I see, they see the need for services, they say these are things seen with autism, but they see stuff that doesn't mesh with autism so rather than labeling her that at this point, they want to look at multiple other individual labels. He said he has NO problem with re-evaluating her for autism in a year or two if she is still having these issues after getting services he wants for her.

what this means for her school and evaluations and if she keeps getting services through school... i don't know and that worries me.

 

[Aladora]

First off, I understand. I'm writing a longer response but wanted to let you know right away that there is someone (MANY someones I am sure!) here that understands what you are feeling and going through.

 

[Aladora]

Longer reply (and sorry if this rambles, I'm still getting caffeinated!)

I really understand the mixed feelings of wanting to get an answer so your child can get help but feeling as thought wanting to get your child a label is wrong. Just keep telling yourself that if she needs that label, then by getting it she will get the help she needs. It took us 5 years, 4 speech assessments and 2 complete multidisciplinary assessments to get an answer. When we walked out of that final meeting where they told us that our son was on the spectrum, I started crying. On one hand, I was happy that I was right all along and that our son was finally going to get the funding for the help he needed but on the other hand I was devastated that I was right all along.

It's okay to feel like that.

As for preparing your daughter, I would just tell her that she is going to go and visit with some new doctors and that they are going to talk to her and play with her. When our son went for his first assessment, we prepped him and explained to him what was going to happen. Since one of his main triggers is when things happen that he is not anticipating, we thought that by prepping him, we were doing everyone a favour. Not so, since it gave the team an inaccurate picture of how he is typically. I would bring snacks for your daughter as well as something she can play with while waiting. My son loves his Nintendo DS, so we brought that and it kept him occupied between appointments.

I'm not sure how the day is going to play out for you but I am sure if you call the office where the assessment is going to take place, that they can give you a rundown on what will be expected for you. I would anticipate a day of waiting, so bring a book!

Don't stress too much about the educational side of the tests, many ASD kids do poorly on traditional IQ tests because their minds do not work that way. They do not process abstract questions and concepts well at all. My son also scored very poorly on the verbal puzzles, he just didn't get them at all. But, on the visual ones he was almost off the charts. ASD kids just think and learn differently. It used to be thought that upwards of 90% of ASD kids were on the mental retardation end of the IQ range but recent studies have shown that the method used to test ASD kids is flawed and when they are given a test that is adapted to their method of learning (visual as opposed to abstract) that most ASD kids score on the average to superior intelligence.

Good luck with all of this, I hope things go well.

Please send me a PM if you want someone to talk to about all of this, or even just to rant!

 

[Luv Bunnies]

You sound like a nervous, anxious and proud dad! All of your questions and emotions at this point are very much to be expected. We want to know what's going on with our kids and how we can best help them.

In terms of "prepping" her for the evaluation, I wouldn't do much at all. Just tell her she's going to talk to and play with some new people. Speech and OT evaluations look a lot like play, but the therapists gather a lot of information that way. If she ends up nervous or freaked out by the activities, the therapists need to see that. If you're in the room for any part of the evaluation, it's important to be "a fly on the wall." It's tempting to want to prompt and guide her or speak for her. Only speak to the therapists if they have a question for you. Otherwise, let them explain things to her and handle any anxiety or meltdowns she may have.

I learned that the hard way when my son started OT at 3. When he was upset by something or didn't want to do an activity, he would run to me. The OT told me to stand up so he couldn't climb in my lap and put my hands up so he couldn't grab them. I thought it was terrible to leave my son crying and not comfort him, but it was important for him to trust the OT and learn that she wasn't going to hurt him. He eventually stopped running to me and did the activities, and I could see that it was better that way.

I know it's difficult, but try not to stress about the evaluation. Remember that no matter what diagnosis they give her, she's still the same little girl you know and love. No label will change that. But, it is important to know what's going on with her and what services she needs to help her. Good luck! Be sure to let us know how it goes.

 

[buckeev]

Labels-smables!
Try not to let that stress you out. (I know...easier said...).
our son has advanced much farther than we ever expected, and at almost 14, continues to amaze us. Unconditional love is the best therapy we can ever give our special kids....( and the "not-so-special" ones too! .....)
My wife and I will pray for y'all, Expecting God to gives you comfort and encouragement!

Robert

 

[bookwormde]

First, your child is the same child before and afterwards so there is nothing to be nervous about.
The only preparation you need to do is to give hare a basic idea of what the day will entail (having people talk with her and to see how she is special)
As for IQ, the test do such of poor job of measuring our kids gifts that they are not something that you want to be overly concerned about.
Bookwormde

 

[jodifla]

Please don't fall into the trap of thinking your child has to have an autism label to get extensive IEP services....it's not true.

Make sure a DIFFERENTIAL diagnosis is done of your child, not an autism checklist. There are many different types of disabilities out there, and you want to pinpoint which your daughter is dealing with to get the right help.

My son has an academic aide in the classroom, pullouts for math and reading, pull-in for writing, speech therapy, OT, and social skills training. And with a language and communication impairment label, not an autism label. For him, auditory comprehension and language processing are the issues that impact his life and learning, not autism.

 

[jodifla]

Also, a child with language issues should be given a NONVERBAL IQ test. Any decent diagnostician should know this. That would give you a better insight into your daughter's IQ. And I don't know if you saw the recent study...turns out IQ isn't as "set" as we were led to believe, as some teens make huge leaps even at 19 years old.

I see you are in Wisconsin...they have a very broad definition of educational autism. Just something to be aware of.

 

[minkydog]

Do I try to prepare my child for the evaluation? I usually always set up her expectations. Yet, isn't this exactly why and what they want to see/test/observe? What happens when I DON'T prepare her for things? When I don't... prepare?


How did any of you deal with the mixed emotions of evaluation? We are getting closer (Nov 28th.) and I am just... how can I *want* her to be labeled? But how do I make sure she gets services to help her progress if they don't label her? High functioning is great, but I know if she wasn't so I wouldn't be so nervous about this NOT being it.

I totally get this. I'll never forget the first real up-close-and-personal school evaluation Christian had. My son is very low functioning, but you know, it was hard for me to be completely objective about this. Anyway, they did the eval and he just failed and failed and failed. No matter what they did, he failed. I went home and just cried my eyes out and vomited for about 6 hours, so much that my older kids got scared and called their dad to come home! Of course, the report was devastating all over again and I hated the labelling. I tried to explain to them that he could do *some* things, just not everything. The PT gently told me that they needed to make it look just as "real" as it is for the sake of justifying the many services he needed. Nobody wants their child labelled, but if that's what gets you services then I say label away. It doesn't feel too good, but we parents have to suck it up sometimes. My favorite quote is from Winston Churchill: "When you're going through hell, keep going..." From a man who really knew how to suck it up.

 

[jodifla]

I totally get this. I'll never forget the first real up-close-and-personal school evaluation Christian had. My son is very low functioning, but you know, it was hard for me to be completely objective about this. Anyway, they did the eval and he just failed and failed and failed. No matter what they did, he failed. I went home and just cried my eyes out and vomited for about 6 hours, so much that my older kids got scared and called their dad to come home! Of course, the report was devastating all over again and I hated the labelling. I tried to explain to them that he could do *some* things, just not everything. The PT gently told me that they needed to make it look just as "real" as it is for the sake of justifying the many services he needed. Nobody wants their child labelled, but if that's what gets you services then I say label away. It doesn't feel too good, but we parents have to suck it up sometimes. My favorite quote is from Winston Churchill: "When you're going through hell, keep going..." From a man who really knew how to suck it up.

Proper labels are empowering and can get a child the help they need, it's true. Improper or shoddy labels can send you down a child down a very wrong path that doesn't help them at all. It's not true that any therapy is better than no therapy, for example. You want the therapy that matches your child's condition so he or she has the best chance at improvement.

 

[AverageDiser]

I think it's harder not knowing. Personally speaking, I'm a planner and I feel like I can deal with most anything as long as I KNOW what I'm dealing with. Dd wasn't diagnosed until she was 8, with me wondering for literally years before that what was going on. The school admins pretty much told me I was crazy, while meanwhile I have teachers, etc telling me how intelligent she is as she performs dismally on the olsats, ravens, etc. Socially she always had one or two friends, but more often than not would spend recess/parties by herself. I had one teacher tell me when she was in first grade that I should either put her in a private school or homeschool her because the system would never give her what she needed. Getting that validation that she does have AS and is highly intelligent was probably one of the best feelings I've ever had.

Her OT/SLP evals were the ones she enjoyed the most, the OT eval was very play based, doing finger tricks with money and things like that. She loves language and wordplay so the SLP eval was right up her alley as well. I think the neuropsych was probably the hardest for her, because she's a perfectionist- it frustrates her to no end when she can't do/get something the first time. While he would never come out and say "that's wrong" he would ask her to try something again, and when she heard that she knew/assumed she hadn't gotten it right the first time.

I hope you'll be able to get some answers and peace, I'll be keeping you guys in my thoughts.

 

[Singledad]

Today was the final evaluation for autism. He said that they see autistic traits, but they do not see some things they would expect and thus would rather not label her so, and to 'wait and see' about that label, and go forward with addressing their concerns to see if they resolve. (The He is the head doctor, the they is the evaluation team.)

Need to be seen by a child neurologist for her hand tremors. Need to get therapy for her anxiety, focusing on separation. They want the school to do a full speech evaluation and get her in therapy for that. (he mentioned expressive/receptive disorder.) They want OT to start working on gross motor skills as well, as at this point her gross is farther behind than her fine.

They want the teachers/staff to start really observing and commenting on her social skills/interactions, and watching where she is on that, along with watching for more ADHD signs, such as if she is wiggly/out of her seat/etc.

So, to sum it up... they see what I see, they see the need for services, they say these are things seen with autism, but they see stuff that doesn't mesh with autism so rather than labeling her that at this point, they want to look at multiple other individual labels. He said he has NO problem with re-evaluating her for autism in a year or two if she is still having these issues after getting services he wants for her.

what this means for her school and evaluations and if she keeps getting services through school... i don't know and that worries me.

 

[jodifla]

If you want more of an understanding of MERLD (mixed expressive-receptive language disorder) you can join us over at www.naturallatetalkers.com.)

If your daughter truly has MERLD and not autism, it's good your team took a cautious approach. The therapies/approaches are not the same for these two conditions. The school tried putting my son in an autism classroom, and he made zero progress, even with all the extensive "help." He's progressing nicely mainstreamed, however, because this school is implementing the proper support for MERLD.

And, to reiterate, it is FEDERAL law that your child get ALL the help she needs for FAPE (free and appropriate education) no matter her label.