aspergers assesment questions..

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squirrelflight-77
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10 Jul 2011, 11:48 am

I'm wanting to seek a formal assessment / diagnosis for my daughter for aspergers. My husband does not.

Sooo.. in determining if it is worth the fight.. LOL

- will the assessment tell us how much of a deficit there is in social understandings or will it be 'vague' that there is one but who know how much she does or does not really understand. I'm already pretty sure there is a deficit there but I do not know how much she understands or picks up on social cues. I feel it is not very much though.

for example.. she likes to try and startle me. I am very hard to startle, btw. But she apparently cant tell if I'm startled bc she always asks me if I was startled. IMO seeing someone startled is kind of obvious. I can say yes and when I wasnt and she is happy as a clam with that. Wouldnt most people be able to tell if they startled someone or not? Silly I know but this is one of many.

She doesnt notice is others are or are not listening to her... she is surprised if I sound irritated after she has been yelling about something. She accuses me of yelling when I am not she insists she is not yelling when she is. I'm just very very worried about the social understandings and how that is going to affect her when she is dating, jobs, a mother, etc. she is very literal and takes what you say as equal or more valid than your actions. That worries me.

- what information will we actually get about her from the assessment in detail other than 'yes she has aspergers'?

- what services or accommodations would we gain with an actual diagnosis? I understand that it is very helpful within the school system but we homeschool so we would just be looking at services through the medical field. we do have insurance. and I would be interested in services as she becomes an adult. what is available. Is the diagnosis helpful outside of the public school environment?

-


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cyberscan
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10 Jul 2011, 12:48 pm

I t depends upon the test used. There is the online type of test such as http://www.rdos.net/eng/Aspie-quiz.php, and there is another popular test called the ADOS or Autism Diagnostic Observation Schedule.
Information about ADOS can be found at http://www.mhs.com/product.aspx?gr=edu&prod=ados&id=overview The RDOS simply has about 150 questions that can be answered in a multiple choice format. This test is available online for you to look at.

The other test, known as the ADOS, is not available online and there is little information about the content of the test posted. However, I have taken the ADOS and can tell you specifically what s on it. The test is broken down into four modules, and the module used depends upon the age and personality of the person tested. I took Module four, the youth/adult test. From the moment the evaluation begins to the moment it ends, everything is observed, and this includes the "break time."


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Bombaloo
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10 Jul 2011, 4:26 pm

Much of the testing that is done is subjective so in many cases you do not get a "score" like an IQ that gives you a result in a very quantitative manner. You get an answer like, yes your child meets the diagnostic criteria for autism spectrum disorder because of deficits or specific characteristics in 3 out of 5 categories (I am paraphrasing A LOT). The neurophsycologist we saw did do some testing on receptive vs expressive language and other cognitive funtions that rate children on a precentile scale so it tells you where your kid is compared to their age peers. All in all, the testing can help identify specific areas that are most problematic for the child as well as areas where he or she excels. Some of these things may already be very obvious to you but others may not and that would probably be where you would see the biggest benefit from having professionals do a formal assessment. The information you find out can help you target areas that need the most assistance as well as helping him or her continue to excel in areas of strength.

In our situation, I actually couldn't get the insurance company to pay for occupational therapy until the pediatrician used a diagnostic code that referred to autism. I know different insurance has different rules but you might check out what they will cover without a formal diagnosis otherwise you are paying for it all out of pocket, for us that really wasn't a good option.

Also, if the school evaluates and determines that your child is eligible for serivces, I think, though I could be wrong, that the school system would still be obligated to provide services even though you homeschool. I think some other homeschoolers here have posted about that.



draelynn
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10 Jul 2011, 10:00 pm

I would agree with the suggestion to ask the school district to evaluate. The educational testing isn't a formal 'diagnosis' but it will identify her needs and put interventions in place to help address anything they may find. Perhaps that will be a bit easier for your husband to deal with - getting your daughters needs met without a 'label' which is what seems to be many people's big fear. No one wants their child to be labelled and treated different. if the school testing turns up a few small issues perhaps a formal diagnosis isn't even needed as long as she is getting the asssitance she needs. If it turns out that she does have significant issues, perhaps the school assessment will ease your husband towards a doctors formal opinion and suggestions.

I understand where you are in the process - I faced the same issues with my husband. Best of luck to you.



squirrelflight-77
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10 Jul 2011, 10:22 pm

just a reminder that we homeschool so I am only looking at a formal assessment which her insurance will cover. She is already recieving OT services by the way for sensory integration disorder which we do have a formal dx for. Sorry do not have time to write any more right now but will in the morning.. just wanted to clarify that we are not seeking school services in any forml


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draelynn
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10 Jul 2011, 11:44 pm

squirrelflight-77 wrote:
just a reminder that we homeschool so I am only looking at a formal assessment which her insurance will cover. She is already recieving OT services by the way for sensory integration disorder which we do have a formal dx for. Sorry do not have time to write any more right now but will in the morning.. just wanted to clarify that we are not seeking school services in any forml


As a home schooler it is still your local school districts responsibility to provide these assessments and services if needed. You are a tax paying member of your community and are entitled - you are paying for them either way. (Assuming you are in the US of course.) Of course, if you choose not to utilize them that is entirely your perogative as well.



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11 Jul 2011, 10:32 am

squirrelflight-77 wrote:
- will the assessment tell us how much of a deficit there is in social understandings or will it be 'vague' that there is one but who know how much she does or does not really understand. I'm already pretty sure there is a deficit there but I do not know how much she understands or picks up on social cues. I feel it is not very much though. -


This depends entirely on who does the assessment. I agree with Draelynn, your school district (at least in the US) is legally required to assess your child, even if you homeschool - however, our district's assessment was not very helpful (but it is, at least, completely free - and you may qualify for services like social skills classes that are better done in a school setting)

squirrelflight-77 wrote:
for example.. she likes to try and startle me. I am very hard to startle, btw. But she apparently cant tell if I'm startled bc she always asks me if I was startled. IMO seeing someone startled is kind of obvious. I can say yes and when I wasnt and she is happy as a clam with that. Wouldnt most people be able to tell if they startled someone or not? Silly I know but this is one of many.

This sounds typical of many kids with autism; most kids on the spectrum need to learn facial expressions the way other kids learn multiplication tables.

squirrelflight-77 wrote:
-- what information will we actually get about her from the assessment in detail other than 'yes she has aspergers'?

- what services or accommodations would we gain with an actual diagnosis? I understand that it is very helpful within the school system but we homeschool so we would just be looking at services through the medical field. we do have insurance. and I would be interested in services as she becomes an adult. what is available. Is the diagnosis helpful outside of the public school environment?

-


We went to a hospital-based program that was headed by a pediatric neurologist and a developmental psychologist, they specialized in developmental disorders; they "got it" right away (after years of trying to explain to social workers that there was a problem.)

The first assessment they offered us was a $150.00 screener called the ASDS that *I* found to be extremely enlightening - http://www.pearsonassessments.com/HAIWE ... de=summary If I were trying to convince a spouse or someone that my child needed attention, this would be what I would request.

We then did a set of assessments, including the BAS-C, the ADOS and a language assessment. These were administrated carefully and the results were made into a report that the psychologist went over with us. She broke down my son's strengths and weaknesses step-by-step. The depth of some of the strengths and weaknesses didn't come out until we started therapy, but she was pretty accurate.

My understanding is that not everyone approaches these tests in this way. You need to set an initial appointment and find out if the place you are going is able to offer you this kind of clear analysis of the test results.

As for what kinds of treatments, there are many: social skills classes, ABA, speech therapy (you'd be surprised how many well-spoken kids need it) occupational therapy. Some of these are better handled in a school setting (e.g. social skills or pragmatic speech therapy) because they need to work with their peers, but you may be able to get the schools to offer just the therapies without enrolling.

At some point, your child is going to need to learn to be social; she will need social skills to become independent. If she has difficulty socializing, and your description suggests she does - I think getting a diagnosis or services is worthwhile.



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11 Jul 2011, 12:48 pm

The level of services you can get will also depend on where you live and what her official diagnosis is. I was in California when my kids were diagnosed. My daughter is Classic Autistic and was diagnosed as severe and is now considered "high functioning" but considering her diagnosis she got FAR more services than my son who was diagnosed with Asperger's. My son got OT only once a month....I may have been able to get more if I had better insurance. We did get insurance to pay for his social group which I think would have helped him more had we been able to continue it longer. He only got about 6 months before we moved. They have set up a very impressive plan here in France for both my kids.....we were very insistent about it :twisted: ! I learned from my daughters therapists that if you want to get the best help from your kids you never let anyone tell you its not possible. If you push you will get what you want and need. So Im happy and relieved that next year they will have a better system in place for them with the therapy and assistance they both need.
They initially told me that we would get no therapy or assistance for my son when he was diagnosed. I managed to get in home ABA once a week (my daughter got three days a week), speech once a week and OT, once a month paid by the school and the Regional Center. Also we had 40 hours of respite care and summer day camp (for autistic kids). The California government made huge cuts to the Regional Center (Jerks!) so we lost the social group (fortunately I got my insurance to pay with the help of my wonderful pediatrician) and we also lost our educational consultant who would come to IEP meetings with us. I paid out of pocket for swimming lessons...I personally think some sort of physical activity is important for our kids because a lot of them have low muscle tone and also they are exposed to other kids. My daughter suffers from low muscle tone in her legs, its hard for her to walk long distances and she also has pain from having hyper mobility in her joints. I am putting up a youtube video right now showing how strong her arms are though :)....shes a little monkey!
So, as I said, it depends on where you live and how pushy you are willing to be....never take no for an answer there is typically a way around things. If you cant get things covered you may be able to get partial coverage and if you think your kids is being shortchanged, they are, so complain....they try to put you off because they try to save as much money as possible. Dont let anyone tell you your child is too high functioning to qualify for services. In some ways my son has more difficulty than my daughter. He has learning disabilities and it bothers him that he does not have friends where as its not that important to her. His social anxiety is worse and its more disturbing to him. Just because my son can use huge words and he does not so much outwardly appear autistic as my daughter can this does not make him need less assistance. At a glance both of my kids can look very typical but they BOTH still need assistance to be able to function successfully in this world.



squirrelflight-77
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11 Jul 2011, 4:18 pm

Thanks for the input.. I will contact the school and see what they offer. I honestly dont know as we have never had any dealings with the school system. I know that where I work the school that the afterschool kids are from is not very good but I'm in the next little town and the school here is supposed to be great. I did not realize she might be able to get services, etc without enrolling. So another resource is always helpful.

Our insurance is pretty good. Jordan is not getting OT 1x week for 6 mos for her sensory integration dx. And while I feel that will be helpful it does not target specifics to the aspergers.

I also worry that is she is not dx now that she is more likely to be misdiagnosed as an adult if she seeks services for herself. I have been diagnosed with several things, but aspergers has never been mentioned and I'm definitely in that range.

draelynn.. how did you get through to your husband? any advice there?


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11 Jul 2011, 5:10 pm

squirrelflight-77 wrote:
draelynn.. how did you get through to your husband? any advice there?


Well, I have the benefit that my husband will accept the word of a'professional' much more readily than mine. It was a real blow to him to get the official dx despite years of my assertions. He's still kind of processing it 7 months later though. I find it kind of strange how surprised he was. He still, very much feels that she 'just needs to learn to be normal'. He is still very much in denial about HOW AS works and the challenges it presents and how to work with them. It took me nearly 5 years to get him to agree to the dx so I'm not expecting miracles. I'm in the midst of trying to get family services specifically to teach him all the things he refuses to leanr from me, my research and, what i beleive, is personal experience.

Through this journey I've come to accept that I'm probably the genetic source of my daughters dx. All of the things I've been doing instinctively with her, all the things that just made sense and felt natural to me have been confirmed by various professionals to have been the proper interventions all along. I was not trained, or knowledgeable. My husband regulary told me that I could not possibly know what she was thinking or feeling or why she was doing the things he found so frustrating. Turns out I did, I do and I have a pretty good grasp on how to work with them.

It's natural to NOT want your child to have difficulties in life. But, it's another to ignore a childs difficulty out of fear. There are kinder, gentler ways to get that point across but honestly, my weapon of choice will be the words of someone he respects and believes. Unfortunately, that is not me.