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Preparing child for diagnostic appointment?


Twiggy
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Hi all.  I have a question about our first appointment with a Ped Development and Behavior specialist to diagnose and suggest help with dealing with what we and our regular doctor believe is some form of High Functioning Autism Spectrum Disorder in my ds11.  Of course I've known for years (most of his life?) that there was something but only recently has finally reached a point that DH agrees we should do something.

 

Anyhow, we have an appointment coming up to do the full diagnosis and the doctor will spend time with just DH and me and then spend about 90 minutes with DS administering the ADOS-G.  I think that's the one--she said it quickly on the phone and when I look at the tools used, that one looks the most like what she mentioned.

 

DS knows he has anxiety.  We're using this as our lead in for the appointment.  He has said he is "different" though he doesn't realize that all the sensory issues, OCD issues, social issues, executive function issues, and such are all wrapped up in something with the word "disorder" in it.  And we'd like to protect him as much as possible from feeling poorly about himself.

 

My question is, what was your experience with this diagnostic appointment?  Were you in the room with your child?  The doctor said we could be in the room as long as our presence didn't interfere with her discussion with our son.  Our son has major anxiety with new situations so I told her that if we're not in the room, she may have a hard time getting him to participate.  She was fine with that.  What types of questions do they ask?  Was your child open about answering them?  I'm afraid she's going to get these one word answers and not be able to determine anything.

 

Anyhow, any experience you have would be so helpful to hear about.  I'm trying not to be nervous about the appointment.  I think I'm partially worried that the doctor will not be able to see all/most of the things we deal with in order to make an accurate assessment.  Hopefully she'll take our input seriously too.

 

Thanks in advance. 

 

PS: I'm new to the Special Needs board--are we supposed to keep it about homeschooling or is it an open discussion about anything?  Thanks.

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I hope your appointment goes well :)  

 

My son was diagnosed right before he turned 4.  He is not yet at a point where he notices he is different from other kids -- he is still young.  I am very hopeful and optimistic he will be proud of himself and happy with himself.  

 

I know "ADOS" is pronounced A (like the letter A) and then Dos (like microsoft dos).  

 

I am subscribed to Diary of a Mom on facebook, she has an 11-year-old daughter and talks about ways she and her daughter talk about autism, sometimes.  I get ideas from there.  

 

I bet if you google you might be able to find some more information about the ADOS -- but I do not really know about it.  The people where we went were very, very good with my son, and he did a lot better there than he was doing at other places.  So I hope it will go that way for you guys.

 

Anyway -- good luck, but I do not have a lot of info for you.  

 

I bet others will answer :)

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Autistic Spectrum Difference, is what people with ASD live with.

 

Neuro-typicals who suffer the condition of 'Normalism'?

Are unable to concieve of any difference from their version of Normal?

So that they label anyone with a Difference, as being Disordered or Disabled.

Where I look forward to a time when these terms Disorder and Disability are relegated to history.

 

Where people will read that their Difference used to be called a Disorder or Disability?

Where the Disorder is really with Neuro-typicals, who are unable to concieve of Difference?

 

So given that he has said that he is "different" and recognizes this.

Perhaps you could frame it all around diagnosing and understanding his Difference.

 

Where people should allowed to take pride in their Difference !

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Our appointment wasn't a setup quite like this--we were seeking some parenting help, and then we found out that our son was likely on the spectrum (no one had ever suggested that possibility up to that point).

 

I suggest maybe finding some books at the library about autism (The Survival Guide for Kids with Autism Spectrum Disorder, for instance) that have information about appointments like this one to see if they have ideas. I am pretty sure this book talks about why kids on the spectrum have a team of people that help them--you don't have the diagnosis, but it might give you some ideas for how to frame the event.

 

Social stories (Carol Gray is one author of social stories books) about testing and doctor appointments might help to--you could write your own if you find one to use as a pattern. You might find one online.

 

http://www.autism.org.uk/living-with-autism/strategies-and-approaches/social-stories-and-comic-strip-conversations/how-to-write-a-social-story.aspx 

http://www.oneplaceforspecialneeds.com/main/library_social_stories.html 

 

 

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Thank you all for the support and suggestions.  I really like the social stories page and I think laying it out like that will be helpful.  Maybe I'll just email the doctor and ask her for just a couple of examples of questions so I know how to frame the conversation she'll have with him.

 

Geodob, I agree that it's a difference not a disorder.  In fact, it's a gift that just happens to come with some traits that can make childhood a bit rough.  He is brilliant in certain areas and has a nearly photographic memory.  Unfortunately the world is not always as kind and open minded.  And when some kids (or ignorant extended family members) remind him of the areas he is not as strong in (athletics, humor, conversation, etc.) or when he doesn't want to experience other-wise fun events because of certain aversions/obsessions, or when he has frequent melt-downs anytime anything unexpected or unplanned occurs, he feels isolated because he sees others as not being upset about it.  I need to be able to help him learn to navigate life better because just protecting him isn't helping him.  So, I'm looking for the tools and education that I need to support and nurture him toward handling life in a way that isn't so overwhelming for him. 

 

Anyhow, thanks again.  I'm sure I'll have more questions about school stuff and other things.  I appreciate the people on this board being open to sharing their thoughts and experience. :001_smile:

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 I think I'm partially worried that the doctor will not be able to see all/most of the things we deal with in order to make an accurate assessment.  Hopefully she'll take our input seriously too.

 

 

I was focused on the ADOS question, and I really overlooked this part. Sorry about that. Just go prepared to share, and have everything written down. If she doesn't want all that information, ask her when/if you'll be able to share it. I trust that things will go well, but sometimes, it takes a couple of rounds with a couple of different professionals to arrive at a conclusion you feel represents the whole picture. Some of the initial screenings (like at the pediatrician's office) failed to uncover the extent of what we were dealing with. Our conversation with the psychologist did, and then she used more formal assessment measures, and they confirmed things. You're coming from a different direction, but I think most of these professionals want a history from the family to consider as well.

 

:grouphug:

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I guess I'm confused about why the doctor is going to be presenting the diagnosis to him.  I would think that would be the parents' job.

 

Oh, no, the doctor will not be presenting anything to my son.  She's just going to do the standard diagnosing procedures and use that along with the input from dh and me (given to her privately) to put together a detailed diagnosis.  She then calls with a summary of the results and sets a second appointment for dh and I go back in and discuss results in detail with her (without my son).  At that second appointment we put together a plan for any therapy that is needed and also get help with questions from us about things we can do at home or how we should handle certain behavior.  We plan to talk to her about if/when to discuss it with him and get her input, but ultimately it's up to dh and I how/when we talk to him about it.  I don't think we can decide that until we go through both meetings.

 

I was focused on the ADOS question, and I really overlooked this part. Sorry about that. Just go prepared to share, and have everything written down. If she doesn't want all that information, ask her when/if you'll be able to share it. I trust that things will go well, but sometimes, it takes a couple of rounds with a couple of different professionals to arrive at a conclusion you feel represents the whole picture. Some of the initial screenings (like at the pediatrician's office) failed to uncover the extent of what we were dealing with. Our conversation with the psychologist did, and then she used more formal assessment measures, and they confirmed things. You're coming from a different direction, but I think most of these professionals want a history from the family to consider as well.

 

:grouphug:

 

Okay good.  I was thinking of having everything written down but I didn't know if that was too much.  Thanks!

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  • 4 weeks later...

My son was 5 when he was diagnosed. Our appointment was set up just the same as yours. We spent about an hour and a half talking with the therapist (our ds was in the room, but since yours is older, not sure if you would want him in there while you discuss him) and then she spent about an hour and a half administering the ADOS with him alone with her. By the time it was time to go in by himself, he was comfortable enough with her,having been in the room the whole time we were chatting. She had a lot of toys and games set up in her office to keep him busy. We also filled out several questionnaires in the waiting room. So the dx is made via the questionnaire, observation by the therapist and parent reports. The ADOS was a set of different activities that my ds did with the therapist, like trying to engage him in pretend play, back and forth conversation, etc. it was play based, so he didn't realize he was being 'tested'. She asked him questions and made leading questions to try to get him to ask her about herself. She played games with him. We made a follow up appointment, at which time we did not bring our son, and she explained the dx in detail and gave us an extensive written report describing the activities she had done and his responses.

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  • 1 month later...

Thank you Jennifer132. Sorry for my late response.  Things have been crazy busy.  

 

The appointment went well and was very similar to Jennifer132's experience.  He is on the spectrum but we don't know yet all the specifics.  We should find out in the next week or so.  Thank you all for your input.  Now to the next phase of therapy and skills work at home.  Just keep swimming.....

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  • 3 weeks later...

I hear you on the just keep swimming!  I'm glad for you that the evals were helpful in getting things sorted out and that they're connecting you with therapies.  Should make a difference!

 

Thank you.  I'm hopeful!  We've got Asperger's/ASD, Anxiety, and ADHD.  It's a lot of "A's" to digest but we're prioritizing for therapy and moving forward.  It's like a part-time job though so I'm having to cut a number of things to make room for the extra work as well as some extra fun activities to nurture the areas in which he is exceptionally gifted.  :D

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