is my kid autistic?

[Student Mommie]

I'm wondering... is it possible for a child to have autism if he is able to have a great social life, with friends who like him?  Where he can get along, give and take, give into their ideas, etc?

 

I have been assuming my son is not autistic (just ADHD) but I don't want to make a stupid assumption if he needs autism treatment.  I guess I am wondering if autism can look different from what I thought it was... if there is a chance my son could still be autistic even though he has social skills.

[jnaj]

We just found out our 11 year old has high functioning autism. We have spent years discussing different things with pediatricians (that was probably the most useless out of everything in this aspect...for us at least), we have gotten educational evaluations (he has inference/comprehension issues), and it wasn't until recently when we got a complete full educational/psychological evaluation/assessment that we found out. 

 

 

[Plink]

Yes. It is possible. My autistic daughter is outgoing, talkative, and loves plays on words, none of which are expected with an Autism diagnosis. YET, she truly fits the diagnosis. Autism is a spectrum.

 

Talk with your doctor and request a referral to a Neuropsychologist. That is how you can get more info on your own child, and a diagnosis if it is appropriate.

[PeterPan]

It *is* possible to be an extrovert with spectrum (and be empathetic and other things people don't expect), but that's not the same as saying someone has social reciprocity, flexibility, and other NT social skills.  Was your eval and diagnosis through a ped or a psych?  If it was with a ped, then you might look into getting a full psych eval.  You'd confirm the adhd, clarify whether there's anything more going on, and learn a ton about how to teach and connect with him, how his brain works, etc.  Highly recommend.  If you've had the psych eval and they didn't find spectrum, well then there's your answer.  You've probably already filled out spectrum surveys a number of times.  Seems like every practitioner I take my kids to has us do it.  

 

Here's the DSM criteria:

 

DSM-5 Diagnostic Criteria

Autism Speaks is pleased to provide the full-text of the diagnostic criteria for autism spectrum disorder (ASD) and the related diagnosis of social communication disorder (SCD), as they appear in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). As of May 2013, psychologists and psychiatrists will be using these criteria when evaluating individuals for these developmental disorders. For further context, please see our full DSM-5 coverage here.

Social (Pragmatic) Communication Disorder 315.39 (F80.89)

Diagnostic Criteria

A.      Persistent difficulties in the social use of verbal and nonverbal communication as manifested by all of the following:

1.       Deficits in using communication for social purposes, such as greeting and sharing information, in a manner that is appropriate for the social context.

2.       Impairment of the ability to change communication to match context or the needs of the listener, such as speaking differently in a classroom than on the playground, talking differently to a child than to an adult, and avoiding use of overly formal language.

3.       Difficulties following rules for conversation and storytelling, such as taking turns in conversation, rephrasing when misunderstood, and knowing how to use verbal and nonverbal signals to regulate interaction.

4.       Difficulties understanding what is not explicitly stated (e.g., making inferences) and nonliteral or ambiguous meanings of language (e.g., idioms, humor, metaphors, multiple meanings that depend on the context for interpretation).

B.      The deficits result in functional limitations in effective communication, social participation, social relationships, academic achievement, or occupational performance, individually or in combination.

C.      The onset of the symptoms is in the early developmental period (but deficits may not become fully manifest until social communication demands exceed limited capacities).

D.      The symptoms are not attributable to another medical or neurological condition or to low abilities in the domains or word structure and grammar, and are not better explained by autism spectrum disorder, intellectual disability (intellectual developmental disorder), global developmental delay, or another mental disorder.

Autism Spectrum Disorder           299.00 (F84.0)

Diagnostic Criteria

A.      Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive, see text):

1.       Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.

2.       Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.

3.       Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.

Specify current severity:

    Severity is based on social communication impairments and restricted repetitive patterns of behavior (see Table 2).

B.      Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):

1.       Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic phrases).

2.       Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat food every day).

3.       Highly restricted, fixated interests that are abnormal in intensity or focus (e.g, strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interest).

4.       Hyper- or hyporeactivity to sensory input or unusual interests in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).

Specify current severity:

    Severity is based on social communication impairments and restricted, repetitive patterns of behavior (see Table 2).

C.      Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).

D.      Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.

E.       These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.

Note: Individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder. Individuals who have marked deficits in social communication, but whose symptoms do not otherwise meet criteria for autism spectrum disorder, should be evaluated for social (pragmatic) communication disorder.

Specify if:
With or without accompanying intellectual impairment
With or without accompanying language impairment
Associated with a known medical or genetic condition or environmental factor
(Coding note: Use additional code to identify the associated medical or genetic condition.)
Associated with another neurodevelopmental, mental, or behavioral disorder
(Coding note: Use additional code to identify the associated neurodevelopmental, mental, or behavioral disorder.)
With catatonia (refer to the criteria for catatonia associated with another mental disorder, pp. 119-120, for definition) (Coding note: Use additional code 293.89 [F06.1] catatonia associated with autism spectrum disorder to indicate the presence of the comorbid catatonia.)

Table 2  Severity levels for autism spectrum disorder

Severity level

Social communication

Restricted, repetitive behaviors

Level 3
"Requiring very substantial supportâ€

Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning, very limited initiation of social interactions, and minimal response to social overtures from others. For example, a person with few words of intelligible speech who rarely initiates interaction and, when he or she does, makes unusual approaches to meet needs only and responds to only very direct social approaches

Inflexibility of behavior, extreme difficulty coping with change, or other restricted/repetitive behaviors markedly interfere with functioning in all spheres. Great distress/difficulty changing focus or action.

Level 2
"Requiring substantial supportâ€

Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions; and reduced or  abnormal responses to social overtures from others. For example, a person who speaks simple sentences, whose interaction is limited  to narrow special interests, and how has markedly odd nonverbal communication.

Inflexibility of behavior, difficulty coping with change, or other restricted/repetitive behaviors appear frequently enough to be obvious to the casual observer and interfere with functioning in  a variety of contexts. Distress and/or difficulty changing focus or action.

Level 1
"Requiring supportâ€

Without supports in place, deficits in social communication cause noticeable impairments. Difficulty initiating social interactions, and clear examples of atypical or unsuccessful response to social overtures of others. May appear to have decreased interest in social interactions. For example, a person who is able to speak in full sentences and engages in communication but whose to- and-fro conversation with others fails, and whose attempts to make friends are odd and typically unsuccessful.

 

[Crimson Wife]

I've got an autistic child who is sweet, affectionate, outgoing, and I really thought she was "too social" to have ASD. It was clear that she had difficulty with social interaction but because she had receptive and expressive language delay it wasn't clear how much of the social difficulty was due to poor communication. If you were to drop a NT English-speaking toddler in China, that toddler is going to have social interaction difficulties simply because he/she doesn't understand or speak the language.

 

DD actually had 4 different evaluations (developmental pediatrician, school district IEP team, Regional Center psychologist, and pediatric neurologist) and it took all 4 concurring on the HFA diagnosis for me to truly accept it.

 

As she has gained language skills, she has improved her social interaction ability. But it's still impaired compared to her NT peers of the same age. She plays mostly next to peers rather than with them (like a younger NT preschooler would).

[PeterPan]

I've got an autistic child who is sweet, affectionate, outgoing, and I really thought she was "too social" to have ASD. It was clear that she had difficulty with social interaction but because she had receptive and expressive language delay it wasn't clear how much of the social difficulty was due to poor communication. If you were to drop a NT English-speaking toddler in China, that toddler is going to have social interaction difficulties simply because he/she doesn't understand or speak the language.

 

DD actually had 4 different evaluations (developmental pediatrician, school district IEP team, Regional Center psychologist, and pediatric neurologist) and it took all 4 concurring on the HFA diagnosis for me to truly accept it.

 

As she has gained language skills, she has improved her social interaction ability. But it's still impaired compared to her NT peers of the same age. She plays mostly next to peers rather than with them (like a younger NT preschooler would).

Wow Crimson, I hadn't heard that part of your story.   :grouphug: 

 

How long is parallel play considered within the realm of typical?  Guess I could google that myself and find out.  I'm back.  I read the definition, and I wouldn't say my ds parallel plays.  He simply plays on his own.  I guess someone with more savvy would have to watch him to figure that out.

 

I've got a psych calling me back today btw.  (We've already played phone tag twice.)  Someday we'll get sorted out who we're seeing and when.  It's like I have a bunch of options and none of them screaming out as the right ones.  (gifted/2E specialist, autism center, dyslexia specialist, another autism expert, crawl in a hole and give up...)

[cherylswope]

 

I've got a psych calling me back today btw.  (We've already played phone tag twice.)  Someday we'll get sorted out who we're seeing and when.  It's like I have a bunch of options and none of them screaming out as the right ones.  (gifted/2E specialist, autism center, dyslexia specialist, another autism expert, crawl in a hole and give up...)

 

Hello, OhElizabeth. Just a word of encouragement to you.

 

My twins visited a ridiculous number of specialists in their early years. Ultimately the person, not the speciality, always determined our best care. For example, an autism specialist overly focused on the standard Kanner form, likely the one you referenced, and entirely missed my daughter's signs of autism! A harried neurologist dismissed my daughter as "too healthy." Unexpectedly, a persevering speech therapist became our best problem-solver. She spotted autism spectrum, sleep/neurological issues, attention difficulties, sensory disturbances, and more. She cared deeply, educated herself, and patiently attended to my daughter's needs, until we could find care from the suitable specialists. So if you find an informed, analytical person in any of the above areas, you may have a very good start.

 

But whatever you decide, abandon the "crawl in a hole option." :) I've been reading posts here in an effort to determine the needs of moms with special-needs children. You're far more knowledgeable than you think!

 

Blessings to you in your quest -

 

Cheryl

 

mom to adopted 19yo boy/girl twins with autism, learning disabilities, severe mental illness

 

[PeterPan]

Hello, OhElizabeth. Just a word of encouragement to you.

 

My twins visited a ridiculous number of specialists in their early years. Ultimately the person, not the speciality, always determined our best care. For example, an autism specialist overly focused on the standard Kanner form, likely the one you referenced, and entirely missed my daughter's signs of autism! A harried neurologist dismissed my daughter as "too healthy." Unexpectedly, a persevering speech therapist became our best problem-solver. She spotted autism spectrum, sleep/neurological issues, attention difficulties, sensory disturbances, and more. She cared deeply, educated herself, and patiently attended to my daughter's needs, until we could find care from the suitable specialists. So if you find an informed, analytical person in any of the above areas, you may have a very good start.

 

But whatever you decide, abandon the "crawl in a hole option." :) I've been reading posts here in an effort to determine the needs of moms with special-needs children. You're far more knowledgeable than you think!

 

Blessings to you in your quest -

 

Cheryl

 

mom to adopted 19yo boy/girl twins with autism, learning disabilities, severe mental illness

Thank you very much for your encouraging words!  They get me at a good moment.  Indeed today a psych called me back that I finally think could work.  As you say, it's not so much her label as her willingness to TAKE TIME and dig in and understand them.  I'm excited that she seemed to get what I needed and was looking for, and she came up with some creative solutions for issues.  I may not have to crawl in a hole after all.   :)  

Edited June 21, 2014 by Moderator
As you KNOW, we don't do partisan politics on this board. Thanks.

[Crimson Wife]

Prayers/good vibes for your family, OhE! I hope you get some useful information from the psych eval.

 

It took us forever to start ABA, but fortunately we're already starting to see improvement. We've gotten more language improvement from 2 months of ABA than we did from a year of speech therapy with the last private SLP we saw. I wish that we could've started ABA when we first tried to get it but at least DD is receiving it now.

[Student Mommie]

Wow.  This is fascinating.  So my child COULD be on the spectrum and qualify for a diagnosis.  I guess the question is, would he get any benefits from a diagnosis, or would it just reinforce his difficult traits as a sort of self-fulfilling prophesy.  (And I mean no disrespect to others who have sought diagnosis-- it's just that in our case, with our lousy insurance, I don't think he would get any cool services like OT or ABA, so I'm not sure what exactly the benefits would be except that the teachers in his life might not know how to treat him regularly any more.)

 

Now I know when you are a parent you kind of don't notice stuff about your kid that makes them different.

 

But what about if tons of adults think he is "normal"?  Did teachers think your child was neurotypical and it turned out he got an ASD diagnosis?  Teachers just think my son has some difficult aspects to his personality, they never ever suggested I get him evaluated for ASD.  

[EndOfOrdinary]

The one benefit to formal diagnosis is the ability to get modifications when he gets older. He can even get those modifications in college as long as he is identified early. I know with my brother, age was not helpful for him. As he has gotten older his autism has dramatically magnified. In all honesty, my parents did not get him any help at all. Up until third grade, you would not have really known, by fifth he was quirky, by seventh a struggling shy kid, by high school he was totally lost.

 

He made it through college, even had a night job at UPS, but it took twice as long. Once out of college, he held down a good job (job placement was part of college) for just about two years. He was "the weird tech guy." However, he quit because he could not understand how to work the important social aspects. Hasn't had a job since. Never left home. He's now in his mid thirties and practically agoraphobic.

 

Those little quirky things are fine when everyone is learning social skills. The problem is when those other kids catch on, but your kid doesn't. The gap just widens and widens. Even if my brother wanted to go out on a date, the other person would expect him to know certain things by now. Even if he did move out, roommates expect him to understand some basic stuff other people learned at twenty-two. His boss was pretty awesome with accommodations, but now a boss wouldn't be. The scary part of the diagnosis is not that people will treat him differently; the scary part is if they don't.

[Princess Ariel]

My child was evaluated by an early childhood special ed department at age 3 , had 2 years of preschool, years of speech and OT, 2 neuropsych evals and after a third neuropsych eval, was finally diagnosed with pdd-nos at age 10 (we were told it is also  referred  to it as high functioning autism). We were told a few times that she was definitely not on the spectrum, even after I had asked about it but was not pushing for a diagnosis. So you never know what can happen!  I felt this last time, which was 3 years ago, that the diagnosis actually fit!

[PeterPan]

Wow.  This is fascinating.  So my child COULD be on the spectrum and qualify for a diagnosis.  I guess the question is, would he get any benefits from a diagnosis, or would it just reinforce his difficult traits as a sort of self-fulfilling prophesy.  (And I mean no disrespect to others who have sought diagnosis-- it's just that in our case, with our lousy insurance, I don't think he would get any cool services like OT or ABA, so I'm not sure what exactly the benefits would be except that the teachers in his life might not know how to treat him regularly any more.)

 

Now I know when you are a parent you kind of don't notice stuff about your kid that makes them different.

 

But what about if tons of adults think he is "normal"?  Did teachers think your child was neurotypical and it turned out he got an ASD diagnosis?  Teachers just think my son has some difficult aspects to his personality, they never ever suggested I get him evaluated for ASD.  

My ds' SLP doesn't think he's on the spectrum, but she works with severe autism all day long and doesn't see him in social contexts.  You can also have perseverations, missing social cues, and behavior problems with adhd.  To me, I started to ask the question when I realized the answers I needed to my questions were all coming from the autism community even though the SLP he was saying he wasn't on the spectrum.  

 

Btw, this is a total aside, but have y'all gone through your wills lately?  You want to have guardians, a letter of intent, all that set up.  My dd has a label, but her label never made us question someone's ability to take her in in the event of our demise.  Even without evals we know ds would need to be handled a lot more carefully.  He's just a lot harder in every way.  I think some of it is boy-ness, which I think frankly could surprise people if they're used to girls.  We had to think hard about the legal guardian thing and really talk with people first.  Hopefully that's not something that ever has to happen or be taken advantage of, mercy.  I'm just agreeing with your intensity statement and that there can be more going on you're not describing to us.  

 

Kids will also float along labels.  It's screwy, because to our minds they are who they are and we just want answers.  

[Crimson Wife]

We've wanted to set up a SN trust for youngest DD for a while, but unfortunately haven't had the budget to do so. It's hard when a family has to "triage" the spending on the SN child's behalf :-(

[kbutton]

We've wanted to set up a SN trust for youngest DD for a while, but unfortunately haven't had the budget to do so. It's hard when a family has to "triage" the spending on the SN child's behalf :-(

 

We've been told that you can specify in your will that a special needs trust be set up for your DC upon your death. I need to check into that to see if it's possible in our state. The person who told us this is an attorney in NY (we live in the mid-west).

 

[kbutton]

The scary part of the diagnosis is not that people will treat him differently; the scary part is if they don't.

 

I really like how you stated this. I have this worry down inside about my son, and it's nice to hear I'm not just paranoid.

 

[Lecka]

A child of a friend just got an ASD diagnosis at age 9.  They sought it, no one at school ever thought it.  No one at pre-school.  He has had typical ASD struggles, people just think it is "bad."  

 

I think they have got a little better IEP.  I think they have got a little better ways to help his pragmatic language.  

 

I think the main thing may be that they have ruled out that it is anything else.  

I am not sure it has been a huge practical help, though.  

 

But -- I think it does beat wondering, for the mom.  I think that would be different for every person, though.  

 

I have gotten major help for my son, but we have different needs and my son is more severe.  I know her son has gotten breaks in a break room that she says have really helped him, but I think he may have gotten them anyway (without the diagnosis).

 

At our school -- autistic kids are treated well as far as I know.  There is Circle of Friends and it is a popular program.  My friend's son doesn't qualify for Circle of Friends -- he doesn't need it.  But it is not a stigmatizing thing here, at least for elementary.  I don't know about middle school or high school.  You would need to know if it is stigmatizing locally.  It could go either way locally -- maybe teachers would go "ding ding ding, I should try these strategies" and they are good strategies for your son.  Maybe they are not good strategies for your son, b/c he is different from the kids where they are good strategies.  Or maybe teachers would go "oh, autism, I can't be bothered."  Locally I would say it would be a positive, but that is b/c of how the teachers are here.  You would also be able to have him placed in a classroom where the teacher wanted him there -- there are teachers who have additional training and it is b/c they want to be the teachers who have autistic kids in their rooms.  Here -- they happen to be, overall, the better teachers anyway.  Not all the time, but a lot of the time, they are the good teachers who are really striving to be professionals at their job.  

 

But for sure, I think it is possible you could get it and not have much change.  

 

But you do not need a diagnosis to have "permission" to look into strategies that could help your son, maybe that are associated with autism.  I think a lot of autism strategies are excellent for many children, even if they don't have autism.  

[kbutton]

But what about if tons of adults think he is "normal"?  Did teachers think your child was neurotypical and it turned out he got an ASD diagnosis?  Teachers just think my son has some difficult aspects to his personality, they never ever suggested I get him evaluated for ASD.  

 

Yes, to the point of being told that I was the one with the problem. My son with Asperger's is twice-exceptional (gifted plus the disability), so if an adult working with him saw the gifted part, I was often labeled the problem. If they saw the problem part, they still didn't think ASD, and I was still the problem because I wasn't effective with discipline. I've had people praise me one day for his maturity only to later call me on the carpet for something else my son did. Makes the head spin. All of this was pre-diagnosis--I now have a permanent humming noise in my head that drowns out nonsense in self-defense (not really, but it's not far off with how I sometimes cope with nonsense!).

[Lecka]

/crosspost 

 

My friend was told "there is no problem, it is just his personality, there are a lot of variations among children."  

 

That is more from school.  

 

From pre-school they liked him and didn't know about autism enough to know about early signs and symptoms that he did have. 

 

She has gone back and talked to all his previous teachers and pre-school teachers, so that they can be more aware if they have a child like him come through their classrooms in the future.  

 

She wishes he could have gotten social skills help earlier and that he could have gotten into pragmatic language earlier, and that things could have been a little easier on him, I think.  

 

But I don't think she holds anything against the teachers, they just did not know the information.  

 

For myself -- my son is more severe, and I had many people saying there was no need for an evaluation.  The same things like, some kids do things later, it is his personality, he is a sweet kid, he loves you, he is so affectionate.  

 

But no teachers ever said that, lol.  He is not someone that would be missed in pre-school or school.  

 

 

  

[Lecka]

/crosspost

 

I re-read old posts, and actually, I think my friend's son might need more help in middle school than he has needed through 5th grade.  She said it has been getting harder for him as the other children and the classroom expectations have risen.  When he was younger I think (my impression) I think he had some strong acadmic skills that helped him in school, and now there is a need for inferencing in addition to longer class periods and everything.  

 

I guess I do not really know.

 

I just know -- no one thought it, but she and her husband pursued it through their pediatrician, and got a referral to the same clinic where I took my son.  The nearest place that will diagnose is a 2-hour drive away from us.  

 

She is definitely happy to know.

 

He likes to look at the weather on her phone, for different cities, and I think she does not have to wonder why anymore.  I think it may be easier on her that her parent friends know about it, when we might be out and he asks to use her phone to check the weather.  I think it is an explanation and I think her parent friends are probably more understanding about it and things like that.  I probably am.   I did used to wonder why she always let him check the weather in so many different cities, but now I think -- it makes sense.  

 

Also one time I said to my daughter, "Say, I'm sorry Michael."  And he thought I was saying, to him, to say "I'm sorry."  But I was telling her to say "I'm sorry Michael."  It hurt his feelings b/c he thought I was saying "say I'm sorry, Michael," for him to be the one to say "I'm sorry."  It was totally my daughter at fault and I didn't realize for a moment why he was upset.  

 

For something like that, maybe I would not have been unclear, or realized what he thought, a little faster if I had known about it.  That was before he was diagnosed, though, I only thought of it later.  

[Crimson Wife]

 

But you do not need a diagnosis to have "permission" to look into strategies that could help your son, maybe that are associated with autism.  I think a lot of autism strategies are excellent for many children, even if they don't have autism.  

 

I agree with this.

[Lecka]

My son's IEP does have PBIS positive behavior supports.  He has a positive behavior plan.  

 

I am *really* into this, I think it is so helpful and good.  

 

Where we are I think they are more likely to do positive behavior plans for kids with autism.  It is a thing they do, a go-to thing.

 

I *love* it.  

 

But it would just depend on the school.  

 

If he got a positive behavior plan and a teacher who was on board with it ---- I think that would be a huge positive.  I also think, maybe you could get that without a diagnosis.  I don't know.

 

But if they don't do positive behavior plans, or anything that seems like it is any good, then it could be bad. 

 

I think it depends a lot on what the atmosphere is locally.  You could ask around or even ask at school if you can get positive behavioral supports for him.  IF it is something that seems good for him.  

 

Here positive behavioral supports really help a lot -- then teachers like it -- then kids do better.  It is a virtuous circle.

 

Not that it is perfect, but I like it a lot anyway.  

[Crimson Wife]

 

For myself -- my son is more severe, and I had many people saying there was no need for an evaluation.  The same things like, some kids do things later, it is his personality, he is a sweet kid, he loves you, he is so affectionate.  

 

I got the "let's wait and see" attitude quite a bit when my little one was first showing "red flags". She was first diagnosed with Global Developmental Delay because it was quite clear that she wasn't hitting the expected milestones. But I kept getting told, "Well, kids can change a lot between [insert current age] and [insert age + 6 months] and she might just be a 'late bloomer' so let's keep an eye on her." I'm glad that I went ahead and pushed for her to be evaluated by Early Intervention and then the developmental pediatrician. She'd already been receiving services for almost 2 years by the time some of the doubters acknowledged that she did actually have a more serious issue than just being a "late bloomer."

 

Not to say that there aren't plenty of kids who ARE "late bloomers" and that every toddler who shows a delay will turn out to have a more serious issue. But the way I felt is that I'd rather err on the side of receiving services that weren't actually needed than missing out on those crucial early years.

[PeterPan]

We've wanted to set up a SN trust for youngest DD for a while, but unfortunately haven't had the budget to do so. It's hard when a family has to "triage" the spending on the SN child's behalf :-(

We don't have a trust specifically for SN, but we have trusts in general set up for things.  What you can do then is in your letter of intent clarify to the legal guardian what your vision is for the dc, your hopes and dreams, how you'd like things to be prioritized, etc.  So we sat down with the people we chose this time (which shifted from 10 years ago, because we felt we needed younger people who can handle a more challenging situation) and actually told them our priorities.  (like sell the house, sell everything it takes, he gets therapy)  I didn't want a situation where the legal guardian wouldn't understand how EXTREMELY IMPORTANT therapies and interventions (dyslexia tutoring, etc. etc.) are to us.  

 

Our basic plan at this point is not to die, but that's not always possible.  :)

[PeterPan]

My son's IEP does have PBIS positive behavior supports.  He has a positive behavior plan.  

 

I am *really* into this, I think it is so helpful and good.  

 

Where we are I think they are more likely to do positive behavior plans for kids with autism.  It is a thing they do, a go-to thing.

 

I *love* it.  

 

Ok, what's a positive behavior plan?  (in a nutshell)  Is this something we can carry over and implement at home?  I'm all for positive momentum!

[EndOfOrdinary]

When I was a Sped para, a positive behavior plan was the overall way behavior was being addressed school wide with a kid. It meant the message was consistent, constantly happening, and rewards were always for the same things. It was the plan to create positive behavior rather than constantly giving negative feedback for every different thing.

 

We would pick one or two things and focus like mad in those, lots of reinforcement everywhere. When they stuck, pick another couple. It usually went home so parents could really do it there too. Sort of like total immersion.

 

Do not know if that is everywhere, as I only did Sped in one school district.

[PeterPan]

When I was a Sped para, a positive behavior plan was the overall way behavior was being addressed school wide with a kid. It meant the message was consistent, constantly happening, and rewards were always for the same things. It was the plan to create positive behavior rather than constantly giving negative feedback for every different thing.

 

We would pick one or two things and focus like mad in those, lots of reinforcement everywhere. When they stuck, pick another couple. It usually went home so parents could really do it there too. Sort of like total immersion.

 

Do not know if that is everywhere, as I only did Sped in one school district.

So what kinds of things were typical behaviors to reinforce with this?

[Lecka]

Ime it is a lot like ABA, but all the positives.

 

This means lots of prevention strategies.  You know an environment causes sensory problems?  At my son's school there are autistic children who are completely mainstreamed in every way except they spend the first 15 minutes of the day, when the classroom is not settled, and 15 minutes before and after lunch, when the classroom is not settled, in the resource room, and have a quiet and calm atmosphere there, and then go to class.  According to the resource room teacher I spoke too.  There are 3 resource rooms and they keep one calm and quiet.  

 

That is a positive behavioral support.  

 

If you know that a child starts to act up at x time, you have a break for them or give them a snack at x minus 20 minutes.  

 

You allow children to request breaks in certain specified ways instead of giving them a break after they have a meltdown.

 

It can also be tokens, I think, though I am not sure exactly what is PBIS and what is ABA. 

 

Visual schedules are a strategy if they reduce problem behaviors by reducing anxiety.  

 

Announcing fire drills over the loudspeaker instead of setting off the loud blaring alarm -- this is done at my son's school.  

 

My son's list is quite long and it is somewhat "this is how we will respond to his bad behavior" and 'this is the behavior we want to notice and encourage."  Maybe -- it has been a long time since I have read through it, and some of it is more specific to school situations than to home.  I do not need my son to sit at circle time for me, but he had positive behavior supports for that at pre-school.  They tried various things.  He sat in a rocking chair in the back.  He sat in the very front and the teacher gave him stickers as he did well.  Or, pieces of candy.  They might give one smarty to every kid who is sitting on the rug when it is time to begin, or give every kid a hand stamp who is sitting on the rug when it is time to begin.  They might sit by my son and put a token on a token board every timed interval that he sat on his own.  

 

The pre-school teacher also planned themes around my son's special interests some of the time.  He loved the Gingerbread Man, and she did a lot of themed activities about that for a while.  Though I think a lot of kids liked the Gingerbread Man.  He also likes Halloween a lot.  He is better about this -- but at the time if he was not interested in a theme he would really, really not want to sit in circle time.  

 

He liked Wheels on the Bus the best for a while, and she would do it at the beginning to get him going on a good note.  

 

Things like that, too.

 

 

 

 

[EndOfOrdinary]

One of my specific duties with a boy was to constantly be catching him doing something right. Like, twenty million times a day I would say something to the affect of, "you are rockin' standing in line patiently!" Or "I don't think I even need to be here right now because you are doing so well in line." Sometimes I would fake that I could not find him because everyone seemed to be handling being in line without any issues. It was silly, because silly worked with him, but it was also something I was to do at two to three minute intervals as fairly significant enforcement. If I could constantly be reinforcing, he was getting an ego boost and confidence for positives rather than penalized for negatives. We would also play a game where I would believe it was not possible for him to stay patient for thirty seconds. I would pull out my watch and make a whole big to do. When he won, I would act like he was amazing and say, " how long do you think you can do it for now?!" It allowed the student to begin pushing himself slowly toward good behavior. He could feel like he was in control. I would ask things like, "do you think you could wait patiently if I stand here (about four feet away)? I don't know...maybe I shouldn't...." It would allow him to push me away so I was not a crutch. I would eventually be able to stand somewhere in the classroom, but not right on top if the kid. He would start to see it was him, not me. More self control, only in a sneaky positive way.

 

The bus driver would comment on him handling waiting in line, the librarian, the lunch ladies, any one who noticed him doing well. Also, it helped identify places where the student was not doing well as the PP talked about. If everything was going well in all these places except music, what was the difference and how could we help that.

 

As time went on and the behavior worked, the intervals of positive enforcement increased and we would slowly taper off the Rah! Rah! Rah! in line and shift to raising his hand instead of blurting or being okay if he was not the one chosen to answer a question he knew the answer to. The central message is the same, "wait patiently" but it happens in a million different ways. It might take a full year to get down all the ways to wait patiently, but it would be a focus.

 

Some of the focus topics:

Wait patiently

Voice Volume control

Taking turns or relinquishing to someone else voluntarily

A personal schedule which was self managed (like setting up what Tuesday looked like, or pulling off things once they happened, knowing PE was on Thursday)

Not taking things personally and flipping out

Noticing what others were doing (an attempt at social cues, but not moving too much passed awareness since it was elementary)

Asking "how was your day?" or other small direct interactions (listening and providing a one sentence appropriate response was the next step. Not talking their ear off or being self involved, but responding to them)

Using the phrase "I do not like it when you ________. Please stop." In a firm, but friendly tone.

Self calming

 

That covered most of them. Some students would have specifics. The transitions and fire drills were big ones for most kids. Some would have permission to eat lunch earlier in a resource room to avoid the insane cafeteria. That was a pretty common one. So was getting to the bus early to avoid the halls during release.

 

I don't know if any of that helps. I watched it work magic on some kids. I watched others fight tooth and nail. I think it depends on the students personality. It really mattered who kids got paired up with as well. If it clicks, it can be great.

[PeterPan]

EoO, thanks for sharing all that!  That was amazing!!