ARD & Autism - Praying for the worst - a rant * Update w/Eval Results

[JamesMom]

Hi all,

My DS5 was diagnosed with Sensory Intergration at 2.5 after a speech delay prompted contact with Early Childhood Intervention. The speech delay persisted and he was admitted to PPCD program at public school until Kindy (this year, mainstreamed).

The 'A' word was banted about at the admission interviews for PPCD but the diagnosis was not persued, but at an early ARD meeting last month. the IEP team suggested we do so now.

His current IEP included a Resource person for 20 minutes and his need is double that. They also commented that he needs continued services in the classroom and with Speech/OT. However, he is currently enrolled with a Speech problem and this 3 year enrollement expires in April. He needs a new evaluation and if he only needs speech he will lose his daily resource person and OT support which he desparate needs.

The ARD team has brought in the Autism team for evaluation and sent me home 46 pages of evaluations for me to fill out. My concern is on my laymans study of the DSM IV (I have a bachelors with a double major in Sociology & Psych) I don't believe he qualifies (meets only 1 criterea in social instead of the required 2 - he does have the other categories easy). But I should let the professionals do their job as they might see something I don't.

His teacher is giving a disportionate amount of her time and energy to engage with DS who doesn't appreciate that she is there for everyone, not just him. She needs to accomodate his need for a set schedule and is reminded when she deviates and dealing with his tantrums when things don't go the way he thinks they should. He plays well with his peers (though on his terms, rules & timetable) and has been mercifully spared teasing...so far. The IEP team is concerned about managing his frustration level when things change or he doesn't get it right on the first try (and the time needed to calm him down) and that this will get worse as the academic demands increase with grade levels.

But I fear what will happen if he doesn't get what he needs becauswe he isn't autistic. It is hard to be in this position of not wanting the Diagnosis, but needing it so bad to get my son the support he needs.

Thanks for listening...

 

[jodifla]

Hi all,

My DS5 was diagnosed with Sensory Intergration at 2.5 after a speech delay prompted contact with Early Childhood Intervention. The speech delay persisted and he was admitted to PPCD program at public school until Kindy (this year, mainstreamed).

The 'A' word was banted about at the admission interviews for PPCD but the diagnosis was not persued, but at an early ARD meeting last month. the IEP team suggested we do so now.

His current IEP included a Resource person for 20 minutes and his need is double that. They also commented that he needs continued services in the classroom and with Speech/OT. However, he is currently enrolled with a Speech problem and this 3 year enrollement expires in April. He needs a new evaluation and if he only needs speech he will lose his daily resource person and OT support which he desparate needs.

The ARD team has brought in the Autism team for evaluation and sent me home 46 pages of evaluations for me to fill out. My concern is on my laymans study of the DSM IV (I have a bachelors with a double major in Sociology & Psych) I don't believe he qualifies (meets only 1 criterea in social instead of the required 2 - he does have the other categories easy). But I should let the professionals do their job as they might see something I don't.

His teacher is giving a disportionate amount of her time and energy to engage with DS who doesn't appreciate that she is there for everyone, not just him. She needs to accomodate his need for a set schedule and is reminded when she deviates and dealing with his tantrums when things don't go the way he thinks they should. He plays well with his peers (though on his terms, rules & timetable) and has been mercifully spared teasing...so far. The IEP team is concerned about managing his frustration level when things change or he doesn't get it right on the first try (and the time needed to calm him down) and that this will get worse as the academic demands increase with grade levels.

But I fear what will happen if he doesn't get what he needs becauswe he isn't autistic. It is hard to be in this position of not wanting the Diagnosis, but needing it so bad to get my son the support he needs.

Thanks for listening...

Hi. Sorry you are going through this...I know it is hard. I am actually on a message board with hundreds of parents of late talking children, and many have this struggle with the school system.

Here's what you should know:

Federal law says that ANY one of the special ed categories gets a child ALL the help your child needs for the classroom. Language impairments qualify.

My child has a severe language impairment and he gets speech, OT, and aide for a couple hours a day to help direct his classroom work, and pullouts and push-ins for reading and math.

Do NOT let someone tell you that you need to mislabel your child to get the proper support for your son in school. It's untrue. Our school tried to hand us this same line -- luckily, because we consulted with a lawyer and had some of the best specialists in the country working with us, we knew that this was a total falsehood. But schools are used to thinking this way...if it's only speech, the misguided thinking goes, then he only needs speech therapy. That unfortunately is not true when their is also a receptive language issue.

Language impairments can be tricky...they can look like other things, particularly autism. The book The Mislabeled Child is really good at detailing this....it goes into all kinds of disabilities, why they are often misdiagnosed, and what to do about them. It's by Drs. Brock and Fernadette Eide and probably at your library.

Treatments that work well with autistic children often DON"T work well with children with other types of language delays.

We ended up at a research university far away from our home to find out exactly what was going on with our son. They had every Dx on the table and did a differential diagnosis. I can't tell you the difference it made to know exactly what is going on with our son.

Our group is at www.naturallatetalkers.com if you care to check us out.

Good luck.

P.S. The schools often don't do a very good job at Dxing autism. Many states give more money for that Dx, so they are incentivized to give that Dx out. Many have almost no clinical training in Dxing. School psychologists are among the worst about this.

 

[jodifla]

Another idea....most states also have a Early Childhood Developmental Delay that is a broad label and suggests just that...that a child needs time to catch up. It phases out when a child is around 6 or 7, and then you can use another more specific label, if appropriate. The ECDD level should certainly get your child the support he needs.

My Late Talker struggled with classroom behavior UNTIL they did a Functional Behavior Assessment and a Positive Behavior Support Plan. It worked from the FIRST day, even though the school dragged its feet two years before they finally had a good plan done by a qualified professional.

There are a lot of small things they can do to support your child, and they SHOULD be doing them. Visual schedules, building his lesson plans to start and end with success (since he sounds like a perfectionist) are all fairly simply accommodations.

 

[bookwormde]

First he does not need a specific diagnosis to qualify for any specific service, anything which creates a need for the provision of FAPE must be provided under IDEA. Limiting a specific service or accommodation to a classification is in any practical sense a violation of IDEA.
With a sensory integration diagnosis, it is clearly not just a speech issue.

Autistic genetic are only a "bad thing" because of societal expectations, Higher functioning kids have amazing abilities and gifts and just need to learn the skills for effective societal interface.

If he really does not have differences in 2 of these 4 he may not be have autism genetics, but from you brief description I think you need to look more closely. The indicators of not need to be "gross", just qualitatively different.

(1) qualitative impairment in social interaction, as manifested by at least two of the following:
(a) marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
(b) failure to develop peer relationships appropriate to developmental level
(c) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
(Apsergers version)a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)
(d) lack of social or emotional reciprocity

For (a) does he truly engage and present equivalent to his peers (constant eye contact, posture and movement is coordinated and typical. Demanding "His teacher is giving a disportionate amount of her time and energy to engage with DS who doesn't appreciate that she is there for everyone, not just him" , Alone if atypical for the age is likely enough for this item (for a 3 YO this would not be a key but at 5-6 it is a significant developmental indicator
For (b) does he have typical peer relationship and social repartee,

For (c) does he play collaboratively in areas that are not of his choosing or interest. Does he auto engage with classmates and other beyond his close familiar circle.
For (d) does he have full Theory of mind skills for his age and do they allow him to react appropriately to evens and overtures of others.

It is all about significant qualitative differenced that in the higher functioning kids, may be paretic depending on the level of intellectual self adaptation, Look for if the skills are readily generalized to new and unfamiliar situation if not then that is one of the best indicator of the lack or impaired innate genetic societal social skills.

Her is the updated DSM-V which may be helpful also since it is much closer to the "state fo the art" than the 1994 standard.

Autism Spectrum Disorder
Must meet criteria A, B, C, and D:

A. Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:
1. Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,
2. Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.
3. Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and in making friends to an apparent absence of interest in people
B. Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following:
1. Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases).
2. Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).
3. Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
4. Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).
C. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)
Autism Spectrum Disorder
Must meet criteria A, B, C, and D:

A. Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:
1. Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,
2. Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.
3. Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and in making friends to an apparent absence of interest in people
B. Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following:
1. Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases).
2. Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).
3. Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
4. Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).
C. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)
D. Symptoms together limit and impair everyday functioning.
Bookwormde

 

[jodifla]

Actually, again, the DSM-IV actually says the differences must be SEVERE, not just different, as I have pointed out before. It's not on the autism page, but instead a overall qualification for all Pervasive Developmental Disorders.

Again, it takes a real professional to tease out the differences between a severe language disorder and autism at very young ages. We see it over and over and over again on our LTer boards. What looks like one thing before a child has language looks very different after their language comes in.

D) on the new DSM-V is going to be interesting. I don't know how as many self-diagnosed adults are going to be able to claim they are autistic with this limiting factor.

 

[jodifla]

And just in a quick Google search you see where the word "severe" comes in, even in PDD-NOS, which tends to be considered "mild" autism.


http://www.psych.org/MainMenu/Resea...acticeRelevantChangestotheDSMIVTR/PDDNOS.aspx

PDD-NOS

“This category should be used when there is a severe and pervasive impairment in the development of reciprocal social interaction associated with impairment in either verbal and nonverbal communication skills, or with the presence of stereotyped behavior, interests, and activities, but the criteria are not met for a specific Pervasive Developmental Disorder, Schizophrenia, Schizotypal Personality Disorder, or Avoidant Personality Disorder.”

 

[clanmcculloch]

I think most of us self-diagnosed adults have just learned to extract ourselves from a variety of social and even professional situations. I'm a successful computer professional who's married with 2 children. On paper I look like my Asperger Syndrome does not interfere with my life. I could argue though that I had to make professional decisions which prevented me from going even farther in my career through the years because of avoiding situations where I don't feel I can cope. I could argue that I avoid a LOT of social situations (even things for my kids) because of avoiding situations where I don't feel I can cope. I look from the outside like I have no impairment to my everyday functioning but that's through very calculated decisions in my life. I suspect most self-diagnosed Aspies could tell similar stories. We've just learned through painful trial and error where we can fit in and remain in our comfort zones. I'm happy with my life as it is though which is why I've never bothered with a formal diagnosis in the first place.

 

[JamesMom]

Thank you so much for the responses! I knew I could count on the Dis!

1) I have enrolled in the Natural Late talkers site and will check out the info there, thanks!

2) As far as the DSM IV:

(a) is out because he does maintain eye contact and his face is easy to read for emotions (sad, angry & happy)

(b) Teachers and I see impairment because while he seeks interaction with peers it is still on a nomimal and paralel (sp) level and NO imagiary play. There is little give & take -- it is on his terms and his game (he always wants to be first in line, etc and conversations are very one-sided focused on what he wants to talk about). He is very literal - when he plays with legos, it is built as designed in the manual and if he built a space ship, it is only a space ship. I don't recall him picking up an object and personifying it with voices and such.

(c) He shares his accomplishments with family & teachers and is quite enthusiastic about his interests.

(d) He might show limited impairment here. He expresses fear of punishment when other people are hurt as if it was his fault, but only recently (like the last month) has wanted to kiss my 'owies' away like we have done for him. On this note, he has only in the past 6 months given spontaneous hugs with no prompting. If other kids are laughing or acting silly, he will give exeragerated laughs which might suggest he is faking it, but otherwise has a good sense of humor and will laugh at the dog or older brother's antics.

3) I submitted all the paperwork and if he doesn't qualify for autism, I will inquire as to continued services on with Sensory (which there is no doubt he has) and speech dealy. The entire IEP team agrees that he needs the services to continue successfully and I will work the system to get what my son needs. I spoke with the Kindy teacher about all the paperwork, and she said the team will get a better idea when they do their observations. She said today would have been good since DS cried in class because he had to write a sentence instead of what is usually scheduled at that time.

Thanks so much! I hope to hear from the team within a month or so.

 

[bookwormde]

making eye contact is no a disqualifying indicator, lots of kids on the spectrum make eye contact at a level.

The dignosistic issue is not about his ability to show emotion in his facial expressions, although lots of our kids have "variations from standard" but is about thier ability to read, analize and react appropritely to others non verbal social communication.

ALso do not use the "familiar" e.e garegiver interactions as your benchmark, but hte presentation in the societal venue

bookwormde

 

[clanmcculloch]

(a) DD13 makes eye contact. Her eye contact is inappropriate. At times she'll grab your gaze and not let go making people uncomfortable. She's extremely expressive with facial expression and body language and can give you textbook answers for what different facial expressions mean but she misinterprets in others most of the time in practice. This is why I don't like the wording of the DSM-IV or even the DSM-V for that matter. In practice, both of our kids do have this deficit but if somebody unqualified is reading this as a checklist then they'll miss it.

(c) This one really should also include the ability to listen to others with outside interests. Most high functioning kids will spontaniously share on and on and on and over and over and over regarding their interests. They often won't reciprocate.

 

[lovethattink]

Jamesmom, your child sounds alot like mine in behaviors. Mine is being treated as though he has Asperger's because he has all the symptoms for diagnosis, but I was told he cannot be labeled as such because he has a lesion in his brain which is causing the Asperger-like behaviors.

My son cannot read other's body language. He can show us what he looks like when he is happy, sad, excited, angry. But when the psychologist asked him to show what Mommy looks like when she is happy, sad, etc. He answered back that he doesn't remember.

My son loves to play with others, but like yours, has his own set of rules. He also has areas of hyperfocus, Star Wars, and legos. He will talk about these non-stop and cannot read the body or facial cues that the listener no longer wants to hear about legos or star wars. Unless, he is specifically told to stop speaking about them, he will continue until he himself gets bored.

I filled out those surveys for my son. Answer them as honest as you can. The results will give you a good idea if your child is on the spectrum.

My son's treatment includes occupational therapy, physical therapy and behavior modification. All therapists are using the same therapy and techniques they would use on one who has Asperger's. He is making remarkable progress!

I wish you and your son the best. And hope that the school situation works out for his best interest.

 

[JamesMom]

Thanks for the reply. I would think Aspie for my son, but for the speech delay. My son doesn't did speak single words until age 3, didn't say "mama" until 3.5 and 2-3 word combos until 4 and now finally speaks in sentences at 5 with lots of diction problems. However, his fierce adherence to rules, sense of injustice when others seemingly break them, focus on tasks meaningful to him, sensory issues and one-sided conversations point to Aspie.
Who knows, howfully al that paperwork will mean something to the school and their observations will reveal the situation.

Thanks again, y'all for your replies. It's nice knowing I'm not alone. It's hard for my husband to understand that this is not DS being onery or stubborn -- he is simply 'wired' differently. Still dealing with toileting and hygiene issues at 5.5 along with the absolute refusal to eat anything off his limited menu is frustrating my husband to no end, but I keep reminding him -- sensory, sensory, sensory! And that his son is monopolizing so much of class time doesn't sit well with him either, but I finally got through to him that this is why we are working this process now so he can get the 1 on 1 help he needs and relieve the teacher of some of our son's demanding nature.

Jamesmom, your child sounds alot like mine in behaviors. Mine is being treated as though he has Asperger's because he has all the symptoms for diagnosis, but I was told he cannot be labeled as such because he has a lesion in his brain which is causing the Asperger-like behaviors.

My son cannot read other's body language. He can show us what he looks like when he is happy, sad, excited, angry. But when the psychologist asked him to show what Mommy looks like when she is happy, sad, etc. He answered back that he doesn't remember.

My son loves to play with others, but like yours, has his own set of rules. He also has areas of hyperfocus, Star Wars, and legos. He will talk about these non-stop and cannot read the body or facial cues that the listener no longer wants to hear about legos or star wars. Unless, he is specifically told to stop speaking about them, he will continue until he himself gets bored.

I filled out those surveys for my son. Answer them as honest as you can. The results will give you a good idea if your child is on the spectrum.

My son's treatment includes occupational therapy, physical therapy and behavior modification. All therapists are using the same therapy and techniques they would use on one who has Asperger's. He is making remarkable progress!

I wish you and your son the best. And hope that the school situation works out for his best interest.

 

[bookwormde]

Get a copy of Tony Attwood's The complete gude to Aspergers which is availabe in Amazon for about $17, he is the leading clinican in the field and it will give you a baseline of information.

Also get a copy of Genius Genes by Michale Fitzgerald adn Brendan O'Brien, if you want to appriciate what the potential of the genetics are.

 

[JamesMom]

OP here resurrected this thread. I need closure and thought maybe y'all did too

I got the results from the Autism team in the mail. *drumroll* As expected my son does NOT have autism. That is good news.

The bad news is "now what?" We have our ARD on April 14th and I hope that OT comes back with a continued diagnosis of SPD (sensory) and that is enough to keep him with an IEP.

The exhaustively detailed (and accurate, imho) Autism report lists several problem areas where DS5 is demonstratively delayed and we pray that is enough to keep his current interventions in place - resource person 45 minutes a day, speech and OT as well as educating his future teachers on his 'peculiarities'.

Thanks for listening and if you have any ideas on how to approach the upcoming ARD meeting, I would be thankful!

 

[bookwormde]

The good thing is that in 2-3 years the austism genome will be mapped and we will all know for "sure", if we choose to get our kids tested.

bookwormde

 

[jodifla]

Do you have access to a special ed attorney? They can be very helpful to consult with even if you don't bring them to any meetings.

Just remember: It's FEDERAL law that if you child qualifies for speech, he also qualifies for ALL the help he needs for FAPE.

My son has a speech and language label. With that, he gets resource room two hours a day, aides in the regular classroom during academic time, speech, OT, social skills, etc.

 

[Singledad]

The bad news is "now what?" We have our ARD on April 14th and I hope that OT comes back with a continued diagnosis of SPD (sensory) and that is enough to keep him with an IEP.

If he is 5, then yes it is enough. if there is significant delays, then he should qualify for an IEP under the 'significant developmental delay' label in which lasts until the end of his 6 year old grade. an example of this is my DD(5). She just turned 5 march 3rd and is in 4 year old kindergarten. She was just given this label and put on an IEP. (autism has also been mentioned, but since she can still use this label, we decided to wait to have that type of evaluation.) Next year she will be in normal kinder, and her IEP and that label lasts until the END of kindergarten, even though she turns 6 midyear. at THAT time we need to look for another label. So, since he is still 5, SDD will work.


this label basicly means, we don't know what might be going on and may grow out of it, so lets just call it this and see if he even needs help after turning 6.

 

[JamesMom]

If he is 5, then yes it is enough. if there is significant delays, then he should qualify for an IEP under the 'significant developmental delay' label in which lasts until the end of his 6 year old grade. an example of this is my DD(5). She just turned 5 march 3rd and is in 4 year old kindergarten. She was just given this label and put on an IEP. (autism has also been mentioned, but since she can still use this label, we decided to wait to have that type of evaluation.) Next year she will be in normal kinder, and her IEP and that label lasts until the END of kindergarten, even though she turns 6 midyear. at THAT time we need to look for another label. So, since he is still 5, SDD will work.


this label basicly means, we don't know what might be going on and may grow out of it, so lets just call it this and see if he even needs help after turning 6.

Thanks for the reply. Unfortunately, he will turn 6 this summer, hence the evaluations now as his current "label" that he got at 3 will "expire".

 

[JamesMom]

Thanks all for responding. I hope that the Autism report detailed enough specifics to give him a 'general' delay, though am I positive he will be delayed in speech & sensory issues, so that he may continue to receive his current resources for the next three years. There was a reason they called in the Autism team to begin with - because those who work with him recognize that he needs the help! Thanks again for listening and I'll write back what happened at the ARD next Thursday.

 

[jodifla]

Thanks for the reply. Unfortunately, he will turn 6 this summer, hence the evaluations now as his current "label" that he got at 3 will "expire".

In my state, the developmental delay goes all the way to age 8