Not happy with diagnosis

[irishsharon]

Will your son comprehend a detailed explanation of your husband's leg situation, the baby's hip problems, etc? I've found that asking my kids a lot of questions about certain situations helps them process the ordeal better than waiting for them to formulate the questions themselves. When I was diagnosed with melanoma, I made sure they knew pretty much what I knew - they were 10 and 12 years old, and I let them ask me all kinds of questions too, even the big one - if I was going to die!

What I've found out while working with kids with all kinds of diagnoses is that kids' imaginations can be very strong, and a little misinformation can go a long way! The more anxious ones tend to look at the worst case scenario as the end of the world - and I try to get that scenario out of them, get it written down on paper, or on the board, and then brainstorm with the child how to deal with that situation.

Here's an example: (and it's a blend from many students, so as not to breach confidentiality)

Student is afraid to go through the lunch line. Refuses to even go in the cafeteria. Find out that the worst-case scenario is that he is afraid that when he gets in line, he'll either lose his money and not be able to pay, or drop his tray of food. He's scared that he'll lose his temper and make a horrible scene.

So, we role play. I pretend to drop a tray of food. I ask the pretend cafeteria staff for help cleaning it up. I don't have enough money, and ask for a voucher. I thank the pretend people that help me. I even pretend to get frustrated, and practice my calming down technique... Then we brainstorm for other unforeseen issues - like a fire drill during lunch, or a food fight, or not liking the lunch that was purchased.

We go into the cafeteria and meet the staff before it gets crowded and loud. I ask them, in front of my student, what would happen in the above situation. The staff now understands that the kid is anxious about stuff, and are quite willing to help him out. We even arrange a plan that the student can leave the cafeteria at any time to go straight to the nurse's office to calm down.

I hope these ideas help - anxiety is a big hurdle to overcome - I've got anxiety issues as well, panic attacks for the most part, so I really sympathize with my students that are anxious!

His baby brother is now four,however the issues my Dh deals with because of lympademia will be with him the rest of his life(he had to have hip replacement surgery last summer)I think I have to give as much information as he needs to feel somewhat at ease.That is a great idea about walking the child through a fear like the lunch line(my son has never bought lunch even though I paid for a months worth)He will be going to a new school this september because he will be going into an inclusion class I am worried for him, the only good thing is that the social worker from his old school works at his new school.I think we always take into parenting things from our own childhood, my mom died when I was 9 and I helped raise my brothers and sister because of this I want my kids to have a carefree childhood and not grow up to fast,now I feel I may have babied them.They are still little to me 4 and 8 Thanks for listening

 

[DVCisME]

Hi Everyone! Original Poster here. Sorry I was on vacation. I have read through the whole thread. Thank you all for taking the time to post. I am going to look into more of a group approach and into a developmental pediatrician.
Thanks again for all the help!

 

[deerhart]

OP
As you can see there is lots if disagreements in this area so that is why it is so important to find a highly qualified clinical group that is in the mainstream. This is the biggest reason to educate yourself broadly.

Deerheart,

I suspected that you were a follower of Edie since much of what you put forward is in keeping with his views.

He has some great insight and positions as to not treating our kids as a label and dealing with the presented characteristics but unfortunately it is so contaminated by the bias that Autism genetics is not the basis for many of the characteristics presented that it renders his work so suspect that it is not widely accepted.

Best practices are very understandable and make it obvious that presentations do not have to be classic. "Marked" mean noticeable, measurable and with significant impact and in no way requires it to be severe.

An example is just that, one of a multitude of items which may represent a group.
I agree although rare it is possible for people to be both ADHD and ASD.

I agree fully that taking the time to find the cause of a manifestation associated behavior is essential, unfortunately the vast majority of clinicians do not take the time to do this, from my experience because they are not trained and competent to make these determinations. This deeper look is what has brought the many leading clinicians to the basic understanding that while there can be environmental causes, most are structural neurological based, and that they appear to come from the same multigenerational gene sets. Sometimes individual have discreet characteristics, but much more often there is variability across several areas with self adaptation and other cognitive factors playing a primary part in the severity of presentation and the associate impact on the individual. The most obvious examples are the great inventors and creative minds who it is widely accepted have the non linear EF gene set related to Autism, yet would certainly not be considered as having a disability even though it is well documented that they had areas of linear EF where they had clear deficits.

You have to have to have 2 items from I and 1 item from II each of III-V for a diagnosis so certainly no one characteristic makes a qualification.

It is pretty clear now that within 5 years we will have the genetic testing to tell and we will all know for sure if the bulk of the highly qualified clinicians are correct or those outside the mainstream and/or are not still using practices from 5 or more years ago are right. It has always been funny to me that the most resistant parents I work with are those who have some of the same characteristics (typically much more subtle) as their children and perceive Autism as only the most classic severe presentation when that only represents a minority.

Bookwormde

Actually, my liking of the Eide's work has nothing to do with my stance on the actual dx criteria and what that requires (that firmly comes from multiple clinicians in the midwest). My take on the Eidie's actually deals with how you handle the exhibited behaviors on a day to day level versus determine how to DX them.

Not sure where your getting your definition of marked, but I have never seen it not associated with the term severe. This has been through questioning doctors, medical definitions, etc.. ALWAYS marked has been the equal of severe. If you read enough medical records and look at enough check lists, the sequence is MILD, MODERATE, MARKED.

BTW I am a FIRM believer that both ADHD and autism are genetic based. I am NOT a believer that either ADHD or Autism can be cured (so for all of those out there that say their kid's adhd was cured when they discovered they were allergic to dairy or whatever else and took them off it, your child has an allergy and was misdx ADHD not cured).

As for the dig that I am a resistant parent who has the same but more minor similarities . It was unprofessional clinicians who had no clue how to even approach an autism dx and who were of the belief that well anything close and even MILD despite the requirements of the DMS IV who made us lose several very valuable years for our son. What's truly funny is that for my son's neuropsych appointment, we and the school (who firmly believed he was an aspie) had to fill out the ADOS. WE had him scored higher then his SPED teacher (who for YEARS would go on about his aspie dx which he didn't have) did and none of the scores were even remotely close to even a suggestion of autism. Today, no one would guess anyone ever thought he was close to the autism spectrum (nor would they guess he had over a 50% speech/language delay either)


As for anxiety, we find that like a pp giving our son the information beforehand really helps and then letting him sort of act it out in a safe environment.

One example we just had to deal with was a major bus accident happened last week in which a teenage girl was killed while sitting in the back of the bus. My son normal sits at the very back of the bus and thus got really anxious about it being "safe" (my gosh this kid will come up with anything from snakes, to bugs, to flesh eating bacteria to worry about really). But, for my son, the anxiety is personality based. He has a very uptight, worry about everything personality and it drives the anxiety along.

Irishsharon
Someone else on the board also brought up the possibility of something in his life causing the anxiety.The only thing I can think of is that Dh has issues with his leg and because of this has been in the hospital many times.Also DH brother passed away suddenly when DS was 5.That same year we moved back to NY to be close to family and bought DH's brothers house.I didn't even think that this would be the cause of his anxiety because he was an anxious child before all of this happened.I just thought of something else DS was so excited to be a big brother and when BB was born he had two dislocated hips and had to wear a harness and then had surgery and a cast put on at four months.Because DS kept saying boo boo that became his BB nickname.I can't believe I did not see these as emotional trauma's to my very empathetic sensitive child.I guess I was so in the moment with dealing with the situation,and thinking he was to young. Now what do I do all of these things happened a few years ago the only thing is DH was in the hospital in may because of his leg.

That is a lot to happen to a little kid by age 5. It can be more like PTSD then more typical anxiety because the trip to the hospital or specifically the leg problem is trigger the feelings from a previous emotional event. Thus, the anxiety and worry he feels about this event is worsened by the trigger of old feelings and fears that he may not understand. Like my son, his personality traits may just make him way more prone to anxiety because he's just hardwired that way (if my son doesn't know something and thinks he should, he will worry to his dying day or until he knows it)

 

[bookwormde]

Not intended as a dig , since I have no idea of your personal situation, just my experiance from having worked with 100s of parents.

Severe is a level way above marked in the clincial world.

I agree lots of bad clinicans out there.

WPS SPR has taken the place of ados for most clinicans who are evaluating the higher funtioning kids.

It is all about meeting every need independant of "labels"

bookwormde

 

[elan]

WPS SPR has taken the place of ados for most clinicans who are evaluating the higher funtioning kids.

It is all about meeting every need independant of "labels"

bookwormde[/QUOTE]

Could you explain this to me? I'm trying very hard to learn but this looses me.

 

[bookwormde]

WPS SRS is the Western Psychological Services Social Responsiveness Scale. which was released in 1995 and was is based on the more current understanding of ASD and especially in the higher functioning and self adapting kids than ADOS which was based on the more classic end of the spectrum and its presentation. It has 5 subgroups that are very helpful in focusing therapies and skill analysis. Very few clinicians who are current in AS use ADOS as a primary screen any more . It is a questionnaire very much like all the other 2nd party rating scales. If you have had an evaluation in the past 3 years and it was not a primary part of if then you can be pretty well assured that you did not have a highly qualified clinician. The other "new" (read for effective evaluation of AS kids) is a CAP, Central auditory processing evaluation which helps understand how information in received, discriminated, stored, analyzed and developed into output. If is one of the best gauges of the difference between ADHD and the different ADD that AS characteristic kids have (along with the difference of being able to hyper focus for exceptionally long period of time on areas of special interest).
Since every child with ASD characteristics is very different from the next both in the way the characteristics impact them, how they have adapted, what maladaptive manifestation and co-morbidities have developed, the support that they have received, and the compensatory skills they have developed, that anyone who thinks that they can prescribe "standard" therapies based on a diagnostic label are just plain incompetent. Yes it gives guidance as to what areas to analyze but that is the extent of it. Even siblings who are both ASD within the same family can present so differently that people swear the both cannot be ASD. It takes looking at every characteristic and how it impacts the individual, and working on skill sets to intellectually compensate for the differences to allow them to integrate into NT (neurotypical) society and accommodate them for their specific issues where skill development has not yet occurred or is not possible (like many sensory issues).
Reading Atwood's "The complete guide to Aspergers" (available on Amazon for about $17) is a good starting point." Then get deeper into the specific works for sensory, social and EF issue and the co-morbidities, especially anxiety and its sources in ASD people. I have 100 of books and papers and 1000s of hours of study and I still feel at times like I have major gaps (and the science is advancing so quickly that in 3 months you are out of date).
bookwormde

 

[Schmeck]

WPS SRS is the Western Psychological Services Social Responsiveness Scale. which was released in 1995 and was is based on the more current understanding of ASD and especially in the higher functioning and self adapting kids than ADOS which was based on the more classic end of the spectrum and its presentation.


It has 5 subgroups that are very helpful in focusing therapies and skill analysis. Very few clinicians who are current in AS use ADOS as a primary screen any more . It is a questionnaire very much like all the other 2nd party rating scales. If you have had an evaluation in the past 3 years and it was not a primary part of if then you can be pretty well assured that you did not have a highly qualified clinician.


The other "new" (read for effective evaluation of AS kids) is a CAP, Central auditory processing evaluation which helps understand how information in received, discriminated, stored, analyzed and developed into output. If is one of the best gauges of the difference between ADHD and the different ADD that AS characteristic kids have (along with the difference of being able to hyper focus for exceptionally long period of time on areas of special interest).


Since every child with ASD characteristics is very different from the next both in the way the characteristics impact them, how they have adapted, what maladaptive manifestation and co-morbidities have developed, the support that they have received, and the compensatory skills they have developed, that anyone who thinks that they can prescribe "standard" therapies based on a diagnostic label are just plain incompetent. Yes it gives guidance as to what areas to analyze but that is the extent of it.


Even siblings who are both ASD within the same family can present so differently that people swear the both cannot be ASD. It takes looking at every characteristic and how it impacts the individual, and working on skill sets to intellectually compensate for the differences to allow them to integrate into NT (neurotypical) society and accommodate them for their specific issues where skill development has not yet occurred or is not possible (like many sensory issues).



Reading Atwood's "The complete guide to Aspergers" (available on Amazon for about $17) is a good starting point." Then get deeper into the specific works for sensory, social and EF issue and the co-morbidities, especially anxiety and its sources in ASD people. I have 100 of books and papers and 1000s of hours of study and I still feel at times like I have major gaps (and the science is advancing so quickly that in 3 months you are out of date).
bookwormde

Just opening up that massive paragraph so I can read it.

 

[elan]

Thanks