Questions about autism testing

[BlueTaelon]

We finally got the testing today for high functioning autism for dd13 today, it was a long day and I find myself physically and emotionally drained. The therapist came out to talk to me a couple of different times to update me and discuss some concerns she had (someone else was doing the testing). She seemed to think a couple things were significant but I don't quite understand. Please enlighten me:)

 

dd refused to play with the dolls and act out a scene of some sort and she needed to make up a story to go with a picture book. She refused and I guess there were some tears and a lot of anxiety involved. It sounds like they wanted her to display imaginative play if I'm understanding this right. Thats not something she has ever really done, in fact I remember announcing at the monthly meeting at work how proud I was that at 4 she played tea party with me, it was the first time (and probably the last) she ever used her imagination for that type of play. (I worked at a special needs family resource center so they understood why I was so excited) outside of playsilk fashion design she doesn't do imaginative play, never has.

 

They could tell within 5 minutes of talking to dd she was at least an aspie:( By the end of the day they were able to tell me even without tallying up everything yet were dealing with autism. Said we will get the report in about 2 weeks. Its going to be a long 2 weeks.

[Marie131]

No advice, but lots of hugs :grouphug:.  We`re doing the testing for ds8 in April.

[sbgrace]

:grouphug:  I don't know if it will feel different for you, my son was really young compared, but even though I "knew" hearing the actual words officially was still the start of an emotional process. I didn't expect that.

 

Lack of pretend play in her childhood would be a sign, yes.  I'd expect they were also looking at her interaction/back and forth with the evaluator. Do you think she mentioned it for a reason beyond that? Was she concerned about the level of anxiety/is anxiety a concern for you?

[Terabith]

And yet, I don't really know anything about it, but those two tasks don't seem very developmentally appropriate for a 13 year old.  I can imagine most teenagers resisting those things.....

[MomatHWTK]

I think most teens would understand the task was just that, a task.  For the Aspie it would trigger the anxiety and the "I can't" do this no matter what reaction.  At least that is how I would view the scenario. The absolute rigidity would be an indicator.  :grouphug:

[geodob]

The playing with dolls, is a test of the ability to think from the position of the 'other'.

So that the 'acting out of a scene', is from the position of a participant in the scene.

Rather than as an observer directing it.

So that she would sense herself as one of the dolls, interacting with the other dolls.

 

Though with Autism, typically they have a difficulty with 'thinking from the position of the other'.

Something that is used to help with this, is joining local drama groups, and doing some acting.

While they are provided with a script. As they speak the words and act out the role.

It provides them with an insight into thinking from the position of the other.

 

[BlueTaelon]

:grouphug:  I don't know if it will feel different for you, my son was really young compared, but even though I "knew" hearing the actual words officially was still the start of an emotional process. I didn't expect that.

 

Lack of pretend play in her childhood would be a sign, yes.  I'd expect they were also looking at her interaction/back and forth with the evaluator. Do you think she mentioned it for a reason beyond that? Was she concerned about the level of anxiety/is anxiety a concern for you?

 

She was concerned about the level of anxiety and thinks dd might have some really serious mental health issues as well, (we've adapted every aspect of our life around dd so I honestly dont tend to see what she was telling me very often unless dd is under severe stress and being out of her routine and being asked to do these tasks could very well do that) I was starting to feel a bit over whelmed and frustrated. She was kinda adamant that we see a psych and get dd on some meds and counciling. She refused to acknowledge dd13's blood disorder which will cause the anxiety she's seeing when its uncontrolled (we FINALLY found a Dr a few days ago! Waiting for my tax return since its out of pocket), her celiac disease can also cause those types of  mental health issues as well if the person is getting gluten. I've been transiting to paleo because my body is mistaking legumes and grains for gluten. I'm wondering if the same is happening to her so today we both go 100% paleo. Thank heavens I have gotten some really good meat deals over the past 3 months and as of yesterday the freezer is packed with meat and veggies and I found a website that has recipes that actually sounds like stuff we would eat and it made me realize we could still eat much of the same stuff we already do, just need to swap out things like romaine lettuce for taco shells:)

 

I think most teens would understand the task was just that, a task.  For the Aspie it would trigger the anxiety and the "I can't" do this no matter what reaction.  At least that is how I would view the scenario. The absolute rigidity would be an indicator.  :grouphug:

 

She said dd couldn't and showed a lot of anxiety , started crying and was very confused about what they wanted if I remember right, it was the only thing dd mentioned from the testing and she just said did didn't want to do it and they finally gave up and moved on. What she failed to mention was there were tears involved in that test and several others. They said she had great difficultly doing unstructured stuff and started doing better once they switched over to structured stuff.

 

 

The playing with dolls, is a test of the ability to think from the position of the 'other'.

So that the 'acting out of a scene', is from the position of a participant in the scene.

Rather than as an observer directing it.

So that she would sense herself as one of the dolls, interacting with the other dolls.

 

Though with Autism, typically they have a difficulty with 'thinking from the position of the other'.

Something that is used to help with this, is joining local drama groups, and doing some acting.

While they are provided with a script. As they speak the words and act out the role.

It provides them with an insight into thinking from the position of the other.

 

That explains a lot about what I see around here, dd is not at all able to see things from another POV, she has the same expectations for everyone, she expects dd7 to be just as smart as her and gets angry when dd7 does not meet what she expects which is pretty much always because she's 7 but dd13 does not accept there is a huge difference in ability and knowledge. If I'm down with the flu she doesn't make allowances and still expects me to get up and do everything including making meals full meals, unfortunately it feels like dd13 has no compassion or understanding for anything outside of herself. It saddens me to think that this is not just selfishness and something she can learn:(

 

oh boy, she just got up and is in a VERY BAD mood:( Geeze, she just tried to lock me in my room because I took away the kindle when she rudely demanded I log it back in to hulu, she has been extremely rude, disrespectful and angry making everyones morning very unpleasant. Good thing I removed the latch from the door after the last time she got PO'd at me and locked me and dd7 in:) The door will hold closed due to pressure but not actually lock us in but she doesn't know that:)

 

We have the counseling/services intake appt on the 11th, I'm told they have a lot of resources in dealing with autism, I hope they actually have help to offer because we went though 5 years of intensive counseling/behavior services and got no where but we didn't know autism was part of the picture and that was a different agency that handled that stuff.

[kbutton]

I am glad you are getting answers. I have a 9 y.o. son with Asperger's, and I think counseling could help with the anxiety. Even her PO'd behavior can be a symptom of anxiety (my son rarely displays "worry" when he is anxious). It just seems to be a huge part of life for these kids. A counselor who works with kids on the spectrum will have some ideas for determining just how anxious she is, and if she should be on meds to help. I would not assume anything really worrisome until you talk to a counselor or psychologist who works with HFA or Asperger's. A counselor with this expertise can help you find support groups or social skills classes too if you decide those could help.

 

I would also consider some kind of occupational therapy eval to see about sensory issues. Sensory issues are usually a big part of the picture, and our psychologist explained that sensory issues and anxiety are like two sides of the same coin. She said kids tend to grow out of sensory and into anxiety--they just trade places in how prominent they are. Not all sensory issues are the same--some kids seek input, some avoid, and some do both. Some kids feel better burning off energy in general, and other kids, like my son, need specific sensory input to feel in control of themselves.

 

Bless you for taking care of your daughter's gluten issues! I am gluten-sensitive, and I had to figure it out on my own. I am not on the spectrum, but if I eat gluten, I have lots of anxiety. I wish I had known years ago. Best wishes working on the blood disorder as well. A lot of interesting conditions seem to accompany some kids on the spectrum.

[BlueTaelon]

Its been a longggggg 2 weeks. The results came in the mail today, I was a bit surprised she didn't call me first to go over them before sending the report which she said she would. Scores are right in the middle for High Functioning Autism but hey! It could just be Schizoaffective disorder too! :crying: The report says there are clear autism symptoms but dd is also clearly showing severe mental health issues. She believes it to be Schizoaffective or Schizophrenia. She refuses to acknowledge that dd's blood disorder could be the cause because "vitamins don't cure mental health problems and its been proven" which is BS. She didn't believe me about diet as a possible cause either. According to family I had some pretty serious mental health issues as a teen, I just remember having a really active imagination lol. It was caused by gluten and cleared up when I went GF for celiac. Now as an adult I'm having to go Paleo because my body is also mistaking grains and legumes as gluten. (my Dr is actually the one who figured that one out) I suggested the same could be happening to her because untreated celiac is a known cause of Schizo and the lady poo poo'd it and put it in the report. We managed to do strict paleo for 9 days this month and I saw major changes, dd started smiling, became more talkative and social and even her worst tantrum was better then a normal good day iykwim. Unfortunately we ran out of paleo acceptable foods and I am carless and couldn't get a ride to the store to buy more food so we had to resort to my well stocked non paleo pantry and yep, she's back to being ummmm, unpleasant.

 

So, my car is getting fixed tomorrow so we will have access to paleo safe food again, I will suck it up and empty my bank account to get her seen by a specialist for her blood disorder as Medicaid doesn't cover it but if she's that bad then yes, I need to do it. We went the drug route for 3 years and it didn't help, it just turned her into a zombie and made her gain a ton of weight. I had to see the Dr today for a lovely sinus infection and he asked about her as he sees her too and I told him my plans for the diet, why and seeing the specialist, he's in agreement. We have a long road ahead of us:( I do plan to get services and counseling, we already got the intake done but they need the report I got today before they can move on.

[kbutton]

Its been a longggggg 2 weeks. The results came in the mail today, I was a bit surprised she didn't call me first to go over them before sending the report which she said she would. Scores are right in the middle for High Functioning Autism but hey! It could just be Schizoaffective disorder too! :crying: The report says there are clear autism symptoms but dd is also clearly showing severe mental health issues. She believes it to be Schizoaffective or Schizophrenia. She refuses to acknowledge that dd's blood disorder could be the cause because "vitamins don't cure mental health problems and its been proven" which is BS. She didn't believe me about diet as a possible cause either. According to family I had some pretty serious mental health issues as a teen, I just remember having a really active imagination lol. It was caused by gluten and cleared up when I went GF for celiac. Now as an adult I'm having to go Paleo because my body is also mistaking grains and legumes as gluten. (my Dr is actually the one who figured that one out) I suggested the same could be happening to her because untreated celiac is a known cause of Schizo and the lady poo poo'd it and put it in the report. We managed to do strict paleo for 9 days this month and I saw major changes, dd started smiling, became more talkative and social and even her worst tantrum was better then a normal good day iykwim. Unfortunately we ran out of paleo acceptable foods and I am carless and couldn't get a ride to the store to buy more food so we had to resort to my well stocked non paleo pantry and yep, she's back to being ummmm, unpleasant.

 

So, my car is getting fixed tomorrow so we will have access to paleo safe food again, I will suck it up and empty my bank account to get her seen by a specialist for her blood disorder as Medicaid doesn't cover it but if she's that bad then yes, I need to do it. We went the drug route for 3 years and it didn't help, it just turned her into a zombie and made her gain a ton of weight. I had to see the Dr today for a lovely sinus infection and he asked about her as he sees her too and I told him my plans for the diet, why and seeing the specialist, he's in agreement. We have a long road ahead of us:( I do plan to get services and counseling, we already got the intake done but they need the report I got today before they can move on.

:grouphug:

 

I'm glad you have a doctor on your side. I would definitely continue getting my ducks in a row on that because the doctor might be willing to write a letter to the psych on your behalf if you see clear results with GF/paleo. I'm sorry that you've had troubles getting the blood stuff covered--maybe rules will have changed in the meantime, or maybe you can find a patient advocate that can help it along. Otherwise, I would try to find another psych who will work with you to see what else can be done before declaring schizophrenia or a dual diagnosis. If it is schizophrenia, I'm sure that will be evident at some point on its own after you've done all that you can.

 

If this report is what is getting you access to services, will they allow you to do just an autism label for now and worry about the other later? Or is there any way you can include both this report and something in writing from the doctor to add to the file to counterbalance the psych report?

 

[BlueTaelon]

:grouphug:

 

I'm glad you have a doctor on your side. I would definitely continue getting my ducks in a row on that because the doctor might be willing to write a letter to the psych on your behalf if you see clear results with GF/paleo. I'm sorry that you've had troubles getting the blood stuff covered--maybe rules will have changed in the meantime, or maybe you can find a patient advocate that can help it along. Otherwise, I would try to find another psych who will work with you to see what else can be done before declaring schizophrenia or a dual diagnosis. If it is schizophrenia, I'm sure that will be evident at some point on its own after you've done all that you can.

 

If this report is what is getting you access to services, will they allow you to do just an autism label for now and worry about the other later? Or is there any way you can include both this report and something in writing from the doctor to add to the file to counterbalance the psych report?

 

 

I don't have any clue, I am so overwhelmed right now my head is spinning, I'm being asked to make decisions when I don't even understand all my options and its spread over multiple agencies I haven't even had the report explained to me, she scored very low on executive function skills and she's still having issues with working memory, it looks like visual processing may be an issue again and I'm not sure how that impacts her educationally yet I need to make decisions there too. I'm also PO'd that it appears other therpist got a copy of the report before I did and there are errors, major errors in the history/behavior section so it looks like she's very violent, out of control and a risk to the general public which she is not. She saves her aggression for family members. I have looked and there are no psychs trained to deal with her blood issues in this state, its generally NDs who handle this disease, I will pay for the phone consult/labs with the top Dr in the county for it but it will drain my bank account and it means we can't afford to move and it means I'm back to work full time Monday and I'm not sure how I'm supposed to pull all this off.

[kbutton]

I don't have any clue, I am so overwhelmed right now my head is spinning, I'm being asked to make decisions when I don't even understand all my options and its spread over multiple agencies I haven't even had the report explained to me, she scored very low on executive function skills and she's still having issues with working memory, it looks like visual processing may be an issue again and I'm not sure how that impacts her educationally yet I need to make decisions there too. I'm also PO'd that it appears other therpist got a copy of the report before I did and there are errors, major errors in the history/behavior section so it looks like she's very violent, out of control and a risk to the general public which she is not. She saves her aggression for family members. I have looked and there are no psychs trained to deal with her blood issues in this state, its generally NDs who handle this disease, I will pay for the phone consult/labs with the top Dr in the county for it but it will drain my bank account and it means we can't afford to move and it means I'm back to work full time Monday and I'm not sure how I'm supposed to pull all this off.

 

I'm so sorry it's all rushing at you quickly. I would concentrate on getting all errors corrected. I know that a psych wouldn't work with the blood issues, but I thought that having a doctor state that the blood issues could cause mental problems (and that he agrees you should work on the diet first) might help slow down or offer balance to the psych's perspective on the mental health red flags that she's seeing.

[IsabelC]

Hugs. 

It's hard.

Don't forget to look after yourself while you are advocating for your daughter.

[sbgrace]

This sounds horrible.

 

I'm sorry.

 

I worry when a medical expert is convinced of a dx. and believes a child should be medicated when the parent disagrees. It puts up risks in terms of negligence accusations. The more md's on your side, the better. Can you request a 2nd opinion on the psych dx? Keep her on paleo and have the ND treat the blood issue while waiting for that appointment? I don't think I'd mention the blood disorder if it's not a recognized medical condition within your state. If celiac is linked in research, that might go further in the file. Requesting correction on the history (in writing, nicely put of course) and the request for a 2nd opinion would be helpful.

[BlueTaelon]

Posting on my phone so cant quote. Sbgrace, Believe me I understand and I am worried about her calling cps to push the issue. She did very strongly encourage me to take her to a psych for medication but taking her worries me. All they tend to know is drugs and refuse to accept anything else and it could cause more issues I think. I know her last psych was fine with trying vits because after 3 years she still wasnt stable but when he left his replacement refused to even see us because I refused to medicate. I have another appt with the pedi to discuss the test results in detail tomorrow now that I have the report but not sure im going to make it. Shop thought they fixed my car and they didnt. Im just thankful I noticed the battery light before we hit the freeway. Its an hr drive through a remote deadzone with no cell service and bad road conditions with ice and snow. Im really thankful I had money for a hotel room. Tomorrow is going to suck because we all missed our bedtime vits and I only have B6 in my purse which is not what keeps dd calm. Lesson learned. Keep a back up supply of all vits in jacket and pray im never searched lol. Its been a long bad day, I even forgot my purse at home.

 

Anyway, dr is calling me in the morning to discuss the report. I will get a 2nd opinion but its about 3 mo out to get in to see the psych she recc'd which works in my favor. As far as I know celiac is a known cause of mental health issues as are ceberal allergies but I dont know how mainstream that knowledge is.

[sbgrace]

You have three months to stabilize her on your own then, without running against the recommended action? That sounds positive.

 

I'm sorry. This is very stressful, and it sounds like circumstances are making it worse.

 

[LMV]

What blood disorder does she have?  Are you sure it really isn't covered?  It may just be a scenario where a lab test or prescription isn't covered because the physician used the wrong diagnostic code or didn't fill out a prior authorization form for a non preferred drug.  I realize that this can be a pain for parents and physicians alike but if you haven't already tried calling her pediatrician to let them know that the tests they ordered or medications they prescribed aren't covered it might be worth the phone call to do that.

 

As far as child psychiatry, I tend to think that if there is question about a true axis I diagnosis, they can be very useful. Definitely rule out medical/organic causes as well so ideally the child psychiatrist and the pediatrician will work together a little. I understand the reluctance for medications and it is true that there are definitely risks involved but at the same time withholding medications the child really needs carries significant risk as well.  I'll be honest I had real reservations with putting DFD5 on an antidepressant when she was four but the pediatrician had pretty much ruled out all other possible explanations and two different child psychiatrists both felt that a carefully monitored trial was the best option for her so DH and I went ahead with it.  She has gone from a sad and miserable four year old who couldn't function and was basically a living doll to an active five year who laughs, smiles, runs and loves us, her siblings, and of course her sheep. There was a great little kid buried behind all of the reactive depression and I question if we would have ever met her if we hadn't taken a chance with the Fluoxetine.

[BlueTaelon]

What blood disorder does she have?  Are you sure it really isn't covered?  It may just be a scenario where a lab test or prescription isn't covered because the physician used the wrong diagnostic code or didn't fill out a prior authorization form for a non preferred drug.  I realize that this can be a pain for parents and physicians alike but if you haven't already tried calling her pediatrician to let them know that the tests they ordered or medications they prescribed aren't covered it might be worth the phone call to do that.

 

As far as child psychiatry, I tend to think that if there is question about a true axis I diagnosis, they can be very useful. Definitely rule out medical/organic causes as well so ideally the child psychiatrist and the pediatrician will work together a little. I understand the reluctance for medications and it is true that there are definitely risks involved but at the same time withholding medications the child really needs carries significant risk as well.  I'll be honest I had real reservations with putting DFD5 on an antidepressant when she was four but the pediatrician had pretty much ruled out all other possible explanations and two different child psychiatrists both felt that a carefully monitored trial was the best option for her so DH and I went ahead with it.  She has gone from a sad and miserable four year old who couldn't function and was basically a living doll to an active five year who laughs, smiles, runs and loves us, her siblings, and of course her sheep. There was a great little kid buried behind all of the reactive depression and I question if we would have ever met her if we hadn't taken a chance with the Fluoxetine.

 

She has Pyroluria and Histapenia. The labs are covered under insurance but in order to get the consult with the Dr you need to buy the labs from the company he is contracted with for the consults. You can't just buy the consult time unfortunately because "they want to ensure the tests were done right" even though I would be going to the same lab to get the blood done. Its a profit thing.

 

dd13 has 3 different issues known to cause severe mental health issues and we've already proven this is the right track and 3 years and a lot of different drugs did not help at all. Did you know 2 handfuls of cashews a day has the same effect as that Prozac? Just something to think about:)

 

anyway, the dr called me today to go over the results and will put in the corrections. She got a bit excited when I asked what supports would work to help her be successful in a classroom, she hadn't bothered to put any info because dd is HS'd though a VA but its just not working for us and I need to return to work full time Monday. She said dd would need a self contained classroom or better a local school that only deals with autism and SED kids. I couldn't find any info on the school so I'm waiting for her to call me back with the contact info. It gives me a starting point:)

 

I would love it if she could find success in a classroom but I worry about putting her with SED kids, she's only violent at home and has never even seen violence in person, I worry what behaviors she would bring home or if the stress of another kid losing it would be to much for her but the program she described sounded like it might be good for her academically.

 

 

 

 

[LMV]

She has Pyroluria and Histapenia. The labs are covered under insurance but in order to get the consult with the Dr you need to buy the labs from the company he is contracted with for the consults. You can't just buy the consult time unfortunately because "they want to ensure the tests were done right" even though I would be going to the same lab to get the blood done. Its a profit thing.

 

 

 

The bolded would cause me to question the ethics of the physicians involved.  Personally, I've found the evidence for pyroluria and the clinical significance of histapenia less than compelling but I realize that those who practice alternative medicine feel differently. As a physician, I'm sometimes torn on how to respond to that.  I guess if it works (even due to the placebo effect) I guess that is great.  But at the same time I've had patients who have ended up with significant toxicities due to their many supplements and I've seen families struggling financially invest money in these products at the sacrifice of other necessities including food, and shelter. Both of the latter two issues are problems.

 

Did you know 2 handfuls of cashews a day has the same effect as that Prozac? Just something to think about:)

 

 

No, I didn't! I'd love a reference to the study which showed this.

[PeterPan]

I work with a nutritionist who uses food medicinally.  Even though it's *possible* to use food to get someone stable, you're not going to get there simply by handing someone a jar of cashews.  When she wants to get something into people to create an effect, she uses all kinds of sources and spreads it throughout the day, eating very intentionally.  And while it *is* possible to get someone with serious mental problems stable with food, the clients are then very delicate and easily thrown off with extra stress, outside people confusing them with conflicting advice, etc. etc.