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Autism in older teens, young adults


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My son has a diagnosis of ASD I am not quite sure how they arrived at.  I reread it several times over the last few days and don't find anything that let's me conclude he is autistic.  His major problems are illegible handwriting, being slow and he could use another dose of common sense.  I am not necessarily saying he is not autistic, just that I have no clue how they came to the diagnosis based on the statements in the report.  Hubby is of the opinion I expect too much.  Just because I knew to never scrape a non-stick pan with a knife at the age of 17 doesn't mean everybody else does too.

 

My worries when he is moving out are the "Will he do the dishes and eat three home-cooked meals a day" variety.  We taught all our kids life skills from an early age.  He can cook, do laundry and iron, clean, he is knowledgable in first aid and simple medical matters, he can shop and is financially savvy, we studied nutrition and health including drugs, sex-ed and emotional and physical well-being, personal hygiene, he can do light sewing and is the only one in the family with a green thumb.  He can do simple home repairs, interior design leaves him cold.  As long as everything is functional and he likes the way it looks, he is happy (more power to him).  We talked about legal matters (tax returns, rental lease, scams, insurance...).  Does he do all these things perfectly? No, but given enough time he does them well enough to get through life.  Some things simply do not matter to him, that's fine.  I don't care if he makes his bed on daily basis but do want him to be able to do it.  His shirts can be wrinkly in everyday life but not for a job interview.

 

Will he remember to do those things and will he ask for help when he is stuck?  Will he be able to tell the difference between a small and a big problem and address small problems before they balloon? Hubby says he would be more worried if he did all those things all the time because a dude in his early 20s who doesn't at least occasionally have a sink full of dirty dishes and supports the local pizza joint clearly has issues.  Son has no worries because there are such things as automatic deposit, cleaning services, and since he intents to rent an apartment, finding a decent plumber will not be his problem.  He has no intention of getting his driver's license soon but he will deal with it when it becomes necessary.  He would by far prefer to live in a place with a good public transportation system.

 

He is disorganized and knows it.  Over the past year he has made a big leap in terms of using organizational tools to help.  He had one late assignment, he tends to not lose stuff anymore because he assigns places to where something goes, and he uses his tablet's reminder functions to keep him on track most of the time.  He still tends to get distracted easily.  He can focus though when necessary and hates interruptions when thinking because he loses his train of thought (for example when writing a paper or doing his math).  He can go into hyperfocus but I see that primarily when he is under time pressure, it isn't related to a particular subject or activity.  He does not feel he needs to be productive all the time and doing nothing at times is not a waste of time but valuable because he can recharge.

 

He knows a lot things but I am not sure execution will follow promptly without prompting.  For those of you who have older teens or young adults who have an ASD diagnosis, how does it play out in real life?  How much support do they need?  Do they need support or do they handle life on their own?  Do they recognize their difficulties or are they convinced they have no issues?  How do they function in the work place?

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What are the names of the tests performed, and what surveys did you fill out? We can probably point to the ones that lead to an ASD diagnosis.

 

I will tell you that lots of functional people are still difficult to work with in some settings--it doesn't matter if it's ADHD, ASD, general poor communication skills, etc. It sounds like your son is very logical and is not going to be completely dependent on others, has good skills, etc., but he can still be autistic. Autistic still means not neurotypical, and that has repercussions (take that from someone whose personality is not well-represented in society at large--it's hard to be different). I think you are probably thinking along those lines, but I am not quite sure, so I thought I'd state that just to be on the same page.

 

My kiddo with ASD is not old enough for me to really comment with BTDT, but I do know that he thinks differently, and there are times that leads him to conclude things that are not helpful, and there isn't always much to be done to change his mind. I don't see that boding well down the road, but if he can come to grips with it and recognize his difficulty in this area as you've mentioned, I think that will help avoid misunderstandings or smooth them over more easily when they do occur. My son needs a lot of incentives to do things that other people take for granted. He realizes that and it's not something he likes about himself. It makes me feel bad for him, but if he recognizes the need for a carrot, maybe he'll use it on his own later. If he felt it was unnecessary, I can be pretty sure he will not do things he needs to do later in life. Nothing can make him do something he feels is unreasonable (by his definition). He also has trouble stopping himself from doing things, and he's likely to form kind of rigid habits very, very easily, and then hate that he has that habit. A lot of his future success is going to depend on being able to work through that conflicting stuff in a way that helps him grow. 

 

Your son seems to be using a lot of positive accommodations--does he currently require prompting for those (all, some, none)? Does he think of the ideas himself, but have trouble following through? For things like not wanting to be interrupted, how does that play out? Does he get testy when people interrupt him, or does he advocate for himself early on to ask for more time to process (or is he somewhere in between)? Did he assess for himself that he doesn't have the skills necessary to be a good driver, or is he making the decision based on unreasonable fear and overwhelming anxiety? Does he share his thinking with others in a communicative way (and take in their thoughts as well)?

 

Really, he sounds logical, but whether it's a good kind of logic that weighs pros and cons and considers alternative paths, or it's an anxiety-driven, no one can persuade me these are skills I should consider type of logic, makes a big difference in how his life choices are going to play out. I hope that makes sense.

 

 

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Could you look into getting guardianship or partial guardianship? I would do that now before he turns 18. That way you can kind of see how much support he needs and it will buy you some time.  It sounds like you did an excellent job teaching him life skills, so that's a plus. Lack of common sense ,time management and organizational issues are classic autism. Most kids with ASD have these executive function deficits. Could you ask your doctor to explain how they arrived at ASD? A Parents guide to High Functioning Autism (latest edition) is really great about explaining how a doc would arrive at the diagnosis. It goes into detail about newest edition of the DSM.

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He sounds like my son, who has an ASD diagnosis and is also gifted. You can be not-NT socially and still have friends, be a good friend, etc. 

 

Lack of empathy is not what people think it is...it's not required for a diagnosis--it's something that can be take into account though. Also, it's more like not showing empathy in a way that people expect for lots of kids with ASD. My son is empathetic in the way that your son is, but he's not one to really act in the moment if he sees someone struggling. It's like he doesn't know what to do. If he has some idea what to do, it comes across pretty unnaturally. 

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They/we did SCQ, Conners, Parent Report,Youth Self Report, CBCL, ADOS-2.

 

From the ADOS: his speech was formal and polite (when we walked in she noted that he said "Good Morning and called her Ms. Whatever.  She found that rather unusual as most kids simply say "Hello or Hi".  I do not find it odd for a then 16 year old who was taught to address unknown adults differently than family members or friends.  She also asked me if he understands slang.  He does but would not use it in a setting like that.) A lot of kids will not be as formal as they are taught to be. It is unusual even if it's not definitive.

 

He was not willing/able to discuss his father's deployment schedule and did not seem to express distress at the upcoming absence of his father (we never discuss ship movements with anybody even if we know which do not always do.)  As we were living an area heavily populated by military she should have known not to ask a question like that or expect that answer.  We get at least one message per week reminding us never to discuss troop or ship movements or schedules.  He has grown up in the military. Deployments and absences are a repeated and regular part of our life.  He was anxious when hubby went to Iraq but a regular deployment is just one of those things we all deal with. Perhaps other military kids answer differently than he did or had a different demeanor about their parent's deployment. 

 

He expressed he was not seeking a personal relationship at this time (she asked him if he had a girl friend).  He was not willing/able to discuss his effect on others but believes he is generally well liked and wishes to please others (yes, he always had friends, 2 of them he has had since preschool and 1st grade, they stay in touch via e-mail or Skype.  However, if he cannot find people with shared interests, he is not devastated either.  He is not a lover of crowds because it is often noisy and people shove).  The underlined is consistent with autism in several possible ways--using language to describe social things could be one. He could have trouble seeing himself from the point of view of others. He could have limited ability to connect vocabulary with social stuff or feelings and thoughts. My son has an easier time of that now, but he's still not NT in how he does it. He used to respond to everything like it was completely positive or completely negative, for instance. There was no nuance in between, and words that described thoughts and feelings were not helpful to him. He had to be taught about the middle ground, see faces showing different feelings, learn to math those to words, etc. We had no idea how difficult this was for him--he mostly compensated decently well.

 

He regularly used sentences to communicate.  He was able to use communicative and descriptive gestures.  He often offered information about his own experiences, thoughts and feelings.  While a delay in creative (I had reported a delay in receptive, not creative language when he was 3 and stuttering when he was 4) language in his early years was reported, this was not found to be a concern. She may have seen something else that added up to a delay in creative language. He is an astute young man and shows no difficulties with implied or inferred language and meaning.  His voice is flat when distracted (he mentioned that she kept talking while he was trying to work on some of the tasks which he indeed found very distracting.)  I wouldn't be surprised if most teens would stop working, engage with the tester, and then go back to working. She might have been distracting on purpose.

 

All my kids need prompts to clean the bathroom or take out the trash, we have long arguments over who gets to clean the litter box.  He voluntarily cooks or bakes at times but needs reminders to eat. That is (anecdotally) something people with autism have in common a lot of the time, oddly enough.  He needs reminders to tie his shoes and still often will not do it. That is not very neurotypical. I have to literally drag him for physical exercise.  My announcement that we will engage a personal trainer to work on core strength and build muscle was met with major groaning and resistance. Digging in for non-preferred activities is typical for ASD. He was not going to do push-ups while someone was staring at him. My ASD son is always sure someone is staring at him. He really doesn't know what other people are thinking and assumes the worst. I promised that nobody would stare at him but if we want to accomplish certain goals we need someone who knows what they are doing.  Not every exercise is beneficial for building particular muscles.  He could see the sense in that and while still not overjoyed at the prospect he is okay with it. Being persuaded by logic is pretty typical for 2e ASD.

 

He insists there is a worldwide law that prohibits putting dirty dishes INTO the dishwasher instead of on the counter.  As to why he leaves a cereal box with nothing but crumbs or a milk carton with one sip left, well, he doesn't want to waste food.  Laudable but nobody wants to eat cereal dust covered in a teaspoon of milk.  Sewing on a button depends.  If it is the lowest button and disappears in his pants it is a no go because nobody sees it.  If it is on the front he will do it.  Same with rips.  He will mend a shirt but not jeans because when other people pay a lot of money to buy them that way, he sees no need to spend the time and effort to mend his. Definitely quirky. :-) 

 

As far as people interrupting.  He lets people know when he needs quite time, puts on his headphones and starts.  He gets testy when he is under time stress or if someone repeatedly interrupts for non-essential things or doing it on purpose.  As far as starting tasks, it depends on the subject.  Math and science is easy, English or history can be difficult. Non-preferred tasks again. Once he has an idea he is fine.  Switching tasks again depends.  He finds he hard to stop if he is one paragraph away from finishing, just because we have to leave for a doctors appointment.  I suggested he take his tablet with him and finish the paragraph while we wait or in the car so he only needs to copy later but he says there is too much distracting him and he can't think.  He then has a hard time to get back into his previous mode of thinking after we return.  If he is working on a math problem it is much easier.  If he has his nose in a book he finds it hard to stop just because dinner is on the table, he will wolf down his dinner, scattering it over half the table because he is not paying attention so he can get back to his book. If I make him sit until everyone is finished, he gets rather fidgety. He never feels compelled to finish that last lap on a track and is more than willing to stop right then.  Sometimes he zones out when an assignment is boring and needs constant reminders to get back to work.  He requested that we do no more poetry ever and is there any way to get out US History? People-oriented subjects are not preferred by my son. If the poetry is funny, that's fine. If there is a challenge to writing a poem with certain requirements, that's okay too. General poetry, not usually (though he does like playing with sounds of words). He doesn't care too much about history unless it involves inventions, cars, equipment, etc. in some way.

 

I can see how any of it can figure into a diagnosis of Autism but what I see lacking is the social component.  Most of his "autistic" behaviors stem from physical experiences so in that sense he is not neurotypical.  His inability to write legibly is most assuredly not neurotypical and neither is his processing speed or his motor and visual integration skills.  But if that alone is enough, then why is there a difference between dyspraxia and autism? I think the unusual things you hit on are not usually NT, though Tony Attwood makes a point that almost everything someone with autism does is something that NT people do too, it's just that people with autism have lots more of the unusual behaviors overall. Some of what you are talking about is more social in nature than you think--for instance, being sure people are going to stare at him, yet he'll go out of his way to do unusual things for sensory reasons or for his own purposes, and think nothing of what someone will say, even when it's likely to be a bit quirky. He even makes up rules from the universe to make them logical, lol! 

 

Again, he sounds like my ASD kiddo. A lot. My son is at the lowest support level, and before DSM 5 was diagnosed with PDD-NOS (met the criteria for Asperger's, but was labelled PDD-NOS based on his rate of progress, etc. If DSM 5 had not been implemented, PDD-NOS would be spot on, so definitely "lighter" on the spectrum traits). PDD-NOS is now mostly rolled into ASD.

 

What does he do if he cannot negotiate an alternative assignment? If he's with people he doesn't know, what's he like? Does he do well for a day, a week, etc.? (Most of the time, something unusual pops up, it's just a matter of when.) Does he transfer his skills to new tasks and environments? 

 

Those are all things we're working on with my son, and we're also adding in things like taking feedback from people, and learning to really be able to be in a group and think about what the group is doing, where it's going, etc. Those dynamics are difficult. He can pass, but if conditions are not favorable, he can get himself stuck in a corner.

 

We really don't realize how different our son is until he's out of the house for a week at grandma's, camp, etc., and we realize just how much we do things differently for him and with him. It's not that we necessarily coddle him--it's just that life is very different. We relate differently. Even though my other son has some issues of his own, we function completely differently without my ASD son in the mix.

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He sounds like my son, who has an ASD diagnosis and is also gifted. You can be not-NT socially and still have friends, be a good friend, etc. 

 

Lack of empathy is not what people think it is...it's not required for a diagnosis--it's something that can be take into account though. Also, it's more like not showing empathy in a way that people expect for lots of kids with ASD. My son is empathetic in the way that your son is, but he's not one to really act in the moment if he sees someone struggling. It's like he doesn't know what to do. If he has some idea what to do, it comes across pretty unnaturally. 

 

 

 

This exactly!  Empathy is probably not the right word. It tripped me up when we were first grappling with ds' diagnosis. Ds is very empathic, almost painfully so, but he cannot see things outside of his own perspective. When they say lack of empathy within the context of ASD, this is what they mean. It's rigid thinking, like not being able to transition easily. Not being able to start his meal without first finishing his paragraph or whatever. It is probably hard for him to be interrupted because he has to stop and transition his thinking to something else. Transitions can even be small things like this.

 

 

 

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I do see some atypical things in your description, as well. Because you have concerns about his ability to function independently with his life skills, you might think about taking advantage of the fact that he has the ASD diagnosis and see if you can find resources that will help him in those areas. Check with your insurance to see what kind of therapies would be covered, and check with your county to see if there are resources for individuals with delayed development in life skills and an ASD diagnosis.

 

I think that having an autism diagnosis opens up some doors for help that others don't receive, and so having that diagnosis might benefit him, even if you doubt whether it is accurate.

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Could you look into getting guardianship or partial guardianship? I would do that now before he turns 18. 

 

I have never heard of partial guardianship, but I have heard of POA. Does this vary by state?

 

In my state, someone has to be declared incompetent to do guardianship, so it's recommended only in the most limited cases. If a child is kind of borderline or needs some legal protection, it's often recommended to do POA and then wait and see. 

 

I really, really wish there were an option to delay legal emancipation to 21. That would solve the problem for some of those kids who are probably going to be fine on their own but need more time to cook. Some kids are eligible for IEPs through age 21, so it makes sense to offer some other protections. (Not to mention that when my parents were growing up, some states had 18 and some had 21 for adulthood, and liquor laws varied too--my parents had to get parental permission to marry, or else they would have had to elope across state lines.)

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I have never heard of partial guardianship, but I have heard of POA. Does this vary by state?

 

In my state, someone has to be declared incompetent to do guardianship, so it's recommended only in the most limited cases. If a child is kind of borderline or needs some legal protection, it's often recommended to do POA and then wait and see. 

 

I really, really wish there were an option to delay legal emancipation to 21. That would solve the problem for some of those kids who are probably going to be fine on their own but need more time to cook. Some kids are eligible for IEPs through age 21, so it makes sense to offer some other protections. (Not to mention that when my parents were growing up, some states had 18 and some had 21 for adulthood, and liquor laws varied too--my parents had to get parental permission to marry, or else they would have had to elope across state lines.)

 

 

I'm sorry. I misspoke. I was thinking of temporary guardianship which is an entirely different thing. I did mean POA.

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He sounds like my son, who has an ASD diagnosis and is also gifted. You can be not-NT socially and still have friends, be a good friend, etc. 

 

Lack of empathy is not what people think it is...it's not required for a diagnosis--it's something that can be take into account though. Also, it's more like not showing empathy in a way that people expect for lots of kids with ASD. My son is empathetic in the way that your son is, but he's not one to really act in the moment if he sees someone struggling. It's like he doesn't know what to do. If he has some idea what to do, it comes across pretty unnaturally. 

It really depends.  Some situations are obvious (someone struggling with heavy bags), some situations need more thought (being offered drugs by a close friend in school.  After an afternoon of mulling it over, reporting illegal behavior trumped not telling on a friend.)  In some situations he has no idea how to help other than to listen and being supportive (friend's dad lost job), there really isn't anything he can do.

 

I haven't thought of empathy in that way though.  That is something to pay more attention to.

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https://www.iidc.indiana.edu/pages/Social-Communication-and-Language-Characteristics-Associated-with-High-Functioning-Verbal-Children-and-Adults-with-ASD

 

The above link provides an extensive list of ways that autism can impact social skills. Everyone is an individual, of course, so no one will exhibit all of these traits.

Thank you, this is really helpful.  In the Language Characteristics or Social Communication section there is nothing he consistently exhibits. Under Other Aspects, yes there are several that are always present.  Those would/could account for the diagnosis.  On the whole I have many more symptoms than he does :-)

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I do see some atypical things in your description, as well. Because you have concerns about his ability to function independently with his life skills, you might think about taking advantage of the fact that he has the ASD diagnosis and see if you can find resources that will help him in those areas. Check with your insurance to see what kind of therapies would be covered, and check with your county to see if there are resources for individuals with delayed development in life skills and an ASD diagnosis.

 

I think that having an autism diagnosis opens up some doors for help that others don't receive, and so having that diagnosis might benefit him, even if you doubt whether it is accurate.

That's the crux, nobody in the professional arena thinks he is in need of therapy.  Therapy has been denied by our insurance and doctors have not been willing to write a referral.  He had an OT eval at school and was deemed borderline but still in range.  

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 On the whole I have many more symptoms than he does :-)

 

Since you said it, mind if we roll with that?  I think it's a good step to say ok, maybe I kiss the spectrum, maybe that's ok, maybe LOTS of functional people with PhDs, people on the boards, etc., kiss the spectrum.  You could read Neurotribes (I haven't), Uniquely Human, or Bright Not Broken.  All three books are on the more positive side of things.  

 

It's hard to have a new diagnosis, no matter what the diagnosis, and this is going to be something you spend a lot of time coming to terms with.  It's not something you adjudicate here on the boards and go well I listed 13 things that are awesome about my kid, that psych is a quack, DONE, all in black and white fashion.

 

It's a process.  You're probably going through the stages of grief, just like anyone does.  There are lists you can google.  I'm just saying give yourself some time and let it mull.  Denial is a stage of grief.  Then it transitions to well maybe.  (I'm sure there are better terms.)  Eventually you end up at a point where you go ok, I can live with this, I can be happy with my new normal.

 

Thing main thing is to realize, in a sense, it doesn't matter.  Why fight it?  What if the psych is RIGHT and it is?  Did it change something about him?  Did the psych tattoo it on his forehead so he has to tell everyone if he doesn't want to?  

 

Obviously not.  All it does is give you OPTIONS.  Because when I read between the lines I see a lot of stuff going on.  I don't think the psych was wrong.  I think it takes time to work through this process.  You might like to find a behaviorist (BCBA) you trust and let them spend time with you and your ds.  That's what I did when our diagnosis was in dispute.  I had the 1st psych saying one thing, the school psych (who is asking a different question, in reality, what the school is obligated to intervene on), and the 3rd psych saying something.  It was crazy and confusing and it was really a problem for us!  So I brought in a behaviorist and had her just spend time with us.  You've had the ADOS.  There are more forms.  A behaviorist could have you do some more forms on adaptive living, etc., and it would not only give them a confirmation on the diagnosis but also let them make a plan for what needs to be worked on.  There are adaptive living questionaires they can use to help you make a plan to get him more independent!  I think that's astonishing that people are saying take guardianship of him when he has had NO interventions, NO services to see what could be done.  It happens to people of all IQs that independent living is an issue.  This is something the behaviorist could help you with.  Your county board of developmental disabilities (yes, there is such a thing) can help you with transition services also.  It's important!

 

 

That's the crux, nobody in the professional arena thinks he is in need of therapy.  Therapy has been denied by our insurance and doctors have not been willing to write a referral.  He had an OT eval at school and was deemed borderline but still in range.  

 

What did his eval say from the children's hospital?  What the ped said doesn't matter.  What the school said doesn't matter.  The ped isn't an expert in autism and the school is there to deny services, plain and simple.  Unless they HAVE to, they deny services.  So look at what his report says from the children's hospital.  What do THEY say to do?

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The OP's son has quite a few similarities to my teen son who is on the spectrum.  I may have missed the term used in this thread, but rather than empathy, I think deficient theory of mind is what we are discussing.  Rigidity, inflexibility, lack of "common sense", disorganization...all of those things describe my son.  He can "pass" as NT most of the time.  Many people interact with him quite a lot but do not know he is on the spectrum.  They may think he is very shy because he is quiet.  

 

I know now that my son will take a longer time to mature.  He may not drive until he is 20.  I don't know.  A person who damages a Vitamix because of lack of common sense will not be driving my car anytime soon, I promise you that much.  ;)  At the same time, my son is doing well in the areas of life that matter, IMO.  He works hard with academics, has a sport he is good at that he plays competitively, and has some friends.    It is a life.  :)  This will morph into a part time job, community college, etc.   A goodly part of what makes him successful is his ASD traits of rigidity and black and white thinking.  It is "bad", "wrong", and "stupid" not to do your best at all times.  He is very, very slow at his academics, but he is thorough.  I still have to remind him to brush his teeth.  I still have to make him meals or he will eat a bag of chips.  But I know that someday I will no longer need to do these things.  I can't say when that will be - maybe a year or two or four.  He is still young and changing every year.  I can imagine the end result, though, and it no longer scares me.

 

 

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Sounds similar to my outgoing ASD teen.  Social skill deficits are not the only determinant of autism, they are simply one of the most obvious and disturbing for many people on the spectrum.  For us, anxiety and rigidity are bigger issues than making friends or being thoughtful.

 

Just wanted to offer lots of BTDT sympathy.  The months after my DD's diagnosis were emotionally traumatic for me.  I had to grieve the confirmation that my gut was right - something was "diagnose-ably wrong" with my wonderful child.  I had to come to terms with the opinions of the experts, which are often articulated in horribly blunt ways.  And then, I had to do my research (lots and lots of it) and fight for the services that were being denied, despite the new diagnosis.

 

As others have said, it is okay to let the new diagnosis sit for a while, even if it isn't perfect.  Honestly, I wish that they would make a 6mo follow-up appointment for newly diagnosed ASD families to go over all of the information a second time.  It took me that long to gather enough background information to be able to even begin to understand what the doctor was talking about through the jargon of the industry

 

 

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Again, he sounds like my ASD kiddo. A lot. My son is at the lowest support level, and before DSM 5 was diagnosed with PDD-NOS (met the criteria for Asperger's, but was labelled PDD-NOS based on his rate of progress, etc. If DSM 5 had not been implemented, PDD-NOS would be spot on, so definitely "lighter" on the spectrum traits). PDD-NOS is now mostly rolled into ASD.

 

What does he do if he cannot negotiate an alternative assignment? If he's with people he doesn't know, what's he like? Does he do well for a day, a week, etc.? (Most of the time, something unusual pops up, it's just a matter of when.) Does he transfer his skills to new tasks and environments? 

 

Those are all things we're working on with my son, and we're also adding in things like taking feedback from people, and learning to really be able to be in a group and think about what the group is doing, where it's going, etc. Those dynamics are difficult. He can pass, but if conditions are not favorable, he can get himself stuck in a corner.

 

We really don't realize how different our son is until he's out of the house for a week at grandma's, camp, etc., and we realize just how much we do things differently for him and with him. It's not that we necessarily coddle him--it's just that life is very different. We relate differently. Even though my other son has some issues of his own, we function completely differently without my ASD son in the mix.

Should the report mention a support level?  What would a low level look like?  

 

If he cannot negotiate an alternative assignment he grumbles and does what he is asked to do (he will draw the line at illegal things or things he knows are wrong.  Negative peer pressure has never been a problem).  He is fine with people in general, it depends on the crowd.  Would he relate well to beer drinking, yelling sports fans? He would probably make some conversation about the game, decline the beer and leave at the earliest opportunity.  He would behave as most bored people would, besides it's loud, people shove and the situation might escalate.)  

 

He is meeting many new people in various situations and from what I hear, he is enjoying himself.  Some of the people he meets are kids of my old classmates (so his age) and so far I have only heard positive news (I can ask if he strikes them as awkward, they would tell me).  He exchanged information with a few people when he toured a university he is interested in and they plan on staying in touch to work on a project. He met older brother's friends and had a good time there as well. He actually expressed interest in joining a fraternity. :scared:   He just doesn't like large crowds and thankfully stayed clear of the demonstrations currently going on in Europe.  

 

My life right now isn't different other than that I am down to three people.  Less laundry, smaller meals, fewer expenses, no school.  

 

He seems to be able to transfer skills.  Working on organization for example seems to really have helped.  He helped his uncle move and from what I hear he did a nice job sorting, arranging and packing. He did suggest that rather than lugging the heavy boxes, they get a dolly.  My mother has no complaints (or at least none I take seriously), his room is clean, he gets up on time, he runs errands satisfactorily.   

 

He will try to weasel out of cleaning up dog poop but eventually will do it insisting on using a shovel rather than grabbing it with just the bag over his hand.  I am on board with this one.

 

Seeing how he does away from home was actually part of the reason we sent him.  It's nice to see his is doing better than I expected.

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What did his eval say from the children's hospital?  What the ped said doesn't matter.  What the school said doesn't matter.  The ped isn't an expert in autism and the school is there to deny services, plain and simple.  Unless they HAVE to, they deny services.  So look at what his report says from the children's hospital.  What do THEY say to do?

The hospital suggests only that extended time for tests and adaptive technology in school for handwriting might be helpful. It lists several book titles concerning organization. That's all.  No mention of an IEP or 504 let alone anything else.

 

I think this is part of where my confusion comes in.  I figured an ASD diagnosis would warrant a little more in terms of information, suggestions, pointers what he needs help with and where to get it.  If nothing is needed, why bother with the diagnosis?  I am the only one who even seems to entertain the idea he may or may not have a bumpy road ahead.  That's why I came to this board, I figured I get much better insight here. I

 

I went into this whole thing with concerns about handwriting, fine motor/vision skills and potential problems relating to that.  I came out with a diagnosis for ASD and no answers or help. 

 

I have never heard of a county board of developmental disabilities, will look it up when we get back stateside.  Bringing in a behaviorist sounds helpful, didn't know that was possible.

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Should the report mention a support level?  What would a low level look like?  

 

Seeing how he does away from home was actually part of the reason we sent him.  It's nice to see his is doing better than I expected.

 

You can google the DSM 5 information for autism support levels. I don't know if it's required.

 

I didn't realize that your son was away. I am glad he's doing well. 

 

A behaviorist can help you see areas to work on. Really, and ASD diagnosis should come with support, but often, it does not. Your son is doing well. Offers of help for a child doing well are few and far between. We like to have help from the behaviorist because she can see little things we don't, or she can see little things that maybe don't come up around us--things that happen when he's out in the community and not with us. It might be something you enjoy.

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IEP/504 development happens during team meetings at the school level.  The psychiatrist's testing results are considered when determining whether the student qualifies for services, but they are not an educational plan in and of themselves.  Honestly, as with every disability, it is essential to advocate diligently in order to receive the best services.  The results of testing are necessary in order to prove your case.

 

Take a look this site for more info about teen autism.  The "Additional Resources" section at the bottom has some really helpful information.

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I'm going to chime in and say that he sounds a lot like my ASD (2E) 19 yo too. Like others, mine generally enjoys people, always had friends, and is empathetic. He is also sometimes socially awkward: missing some cues, deals with all those pesky executive function issues of organization, planning and responsibility, and is dysgraphic so the handwriting remains abysmal even now. While his college was willing to give him any accommodation we asked for based on his ASD diagnosis (PDD-NOS at the age of 3), he doesn't use any. He did use extended time and a keyboard for standardized testing getting into college (AP & ACT). If I were setting up accommodations for him the only things I would ask for are extended time and access to a keyboard at all times, so those being the only suggested accommodations sounds perfectly normal for an ASD 17 yo to me.

 

As far as, is there enough there to label him ASD. It is questionable, but certainly not unreasonable. When I meet an ASD teen, I know instantly. I recognize it. They are often functioning normally and most people never question them. Ds functions normally in most situations, but I feel the difference and so do others that know autism. Those that don't know autism, just see it as his slightly quirky personality.

 

I wouldn't try to lose the label. Do with it what you will, but it can open doors for him. Colleges, job placement programs, and more can become options just because he has that diagnosis. On the other hand, no one need ever know he has it if he doesn't want them to. It is an ace up his sleeve so to speak. Most of us with college aged or young adult ASD kiddos will tell you that the issues don't go away and sometimes they even get worse at this age. The kids are supposed to take on new responsibilities and become independent and when our kids try, they often struggle. The evaluator may have been a quack. He may be off-base. But that eval does nothing to hurt your ds and may help him. Let it stand. Learn from it what you can and use it when it helps. That is all it is there for.

 

Oh, and for the person who said start a thread on "normal teen or ASD", my ds would always have been labeled as normal from a written description. When I tried to describe his issues to friends, they always said, "My kids do that too." There weren't any behaviors that were unusual. It was the combination of behaviors and the degree to which he did them that combined to make him clearly ASD and to at times really mess with him and us.

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In reading your descriptions, I'm also wondering if he's in a high IQ range. Of course, that occurs with ASD quite frequently, but many other times, there may be gifted characteristics that are misdiagnosed as ASD (or adhd or something else).

IQ range is in the mid to high 120s.  She said it may not be accurate because the span between visual, processing speed and language is so large.   

 

ADD Inattentive and Dysgraphia are the other two diagnoses.  

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You can google the DSM 5 information for autism support levels. I don't know if it's required.

 

I didn't realize that your son was away. I am glad he's doing well. 

 

A behaviorist can help you see areas to work on. Really, and ASD diagnosis should come with support, but often, it does not. Your son is doing well. Offers of help for a child doing well are few and far between. We like to have help from the behaviorist because she can see little things we don't, or she can see little things that maybe don't come up around us--things that happen when he's out in the community and not with us. It might be something you enjoy.

I truly think the behaviorist is a great idea.  I am hoping they would be able to puzzle out what is normal and what is not.  The other thing I learned from this thread that had not hit home is that he needs to learn to advocate for himself.  I Keep tripping over that 18=legal adult thing.

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Aha. I assume his verbal scores are higher than his visual spatial scores? That is a nonverbal learning disorder profile (NVLD or sometimes abbreviated NLD). Because NVLD is not in the DSM, some psychs will not diagnose it. You can find a lot of information online, if you don't know about it, or I can go through my bookmarks and give you a few suggestions.

 

NVLD is kind of on the border of the autism spectrum. Some people would give the NVLD child an Asperger's label (if it still existed), though not everyone who has Asperger's has NVLD. Others say that it is not autism but it's own thing. (I've come to think that NVLD has a spectrum of its own, with mild to severe cases, and that the more severe it is, the closer it comes to looking like ASD.)

 

DS12 has NVLD. I had never heard of it before his diagnosis. It's not as well known. DS12 can seem like he is on the spectrum. And he can seem like he is not.

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The hospital suggests only that extended time for tests and adaptive technology in school for handwriting might be helpful. It lists several book titles concerning organization. That's all.  No mention of an IEP or 504 let alone anything else.

 

I think this is part of where my confusion comes in.  I figured an ASD diagnosis would warrant a little more in terms of information, suggestions, pointers what he needs help with and where to get it.  If nothing is needed, why bother with the diagnosis?  I am the only one who even seems to entertain the idea he may or may not have a bumpy road ahead.  That's why I came to this board, I figured I get much better insight here. I

 

I went into this whole thing with concerns about handwriting, fine motor/vision skills and potential problems relating to that.  I came out with a diagnosis for ASD and no answers or help. 

 

I have never heard of a county board of developmental disabilities, will look it up when we get back stateside.  Bringing in a behaviorist sounds helpful, didn't know that was possible.

 

I didn't realize you weren't in the States!  That's probably why your report doesn't list things.  Here, a children's hospital report for a dc that age would list the recommended services, discussion transition services, etc.  So that's a really good plan to make an appt with a behaviorist/BCBA for when you get back and have a sitdown and let them go through it with you.  They can do some questionnaires and help you make a game plan.

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Hi there, I'm not sure if this will help you at all, and I did not take the time to read through each response - but I wanted to just mention that I was diagnosed with aspergers syndrome a few years ago, in my late 20's. By the time I was diagnosed, I had already gotten my bachelors degree, worked for about a decade, gotten married, purchased my first home, and had my first child. I suppose a little bit of guidance with social things and stress management would have been nice along the way, but I just wanted to point out that I didn't necessarily need any help. My autism traits are all so mild that they do not interfere with my ability to function in any significant way. I fidget a lot, I have obsessions, I'm not great with people, noise bothers me, etc., but for me, these are almost more like personality traits than anything else. Don't get me wrong, this is not the case for everyone on the spectrum. I have an autistic child who is more on the disabled side, and he has required a lot of help. For some of us, though, it's not quite as disabling or even very obvious on the surface. 

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I'm going to chime in and say that he sounds a lot like my ASD (2E) 19 yo too. Like others, mine generally enjoys people, always had friends, and is empathetic. He is also sometimes socially awkward: missing some cues, deals with all those pesky executive function issues of organization, planning and responsibility, and is dysgraphic so the handwriting remains abysmal even now. While his college was willing to give him any accommodation we asked for based on his ASD diagnosis (PDD-NOS at the age of 3), he doesn't use any. He did use extended time and a keyboard for standardized testing getting into college (AP & ACT). If I were setting up accommodations for him the only things I would ask for are extended time and access to a keyboard at all times, so those being the only suggested accommodations sounds perfectly normal for an ASD 17 yo to me.

 

As far as, is there enough there to label him ASD. It is questionable, but certainly not unreasonable. When I meet an ASD teen, I know instantly. I recognize it. They are often functioning normally and most people never question them. Ds functions normally in most situations, but I feel the difference and so do others that know autism. Those that don't know autism, just see it as his slightly quirky personality.

 

I wouldn't try to lose the label. Do with it what you will, but it can open doors for him. Colleges, job placement programs, and more can become options just because he has that diagnosis. On the other hand, no one need ever know he has it if he doesn't want them to. It is an ace up his sleeve so to speak. Most of us with college aged or young adult ASD kiddos will tell you that the issues don't go away and sometimes they even get worse at this age. The kids are supposed to take on new responsibilities and become independent and when our kids try, they often struggle. The evaluator may have been a quack. He may be off-base. But that eval does nothing to hurt your ds and may help him. Let it stand. Learn from it what you can and use it when it helps. That is all it is there for.

 

Oh, and for the person who said start a thread on "normal teen or ASD", my ds would always have been labeled as normal from a written description. When I tried to describe his issues to friends, they always said, "My kids do that too." There weren't any behaviors that were unusual. It was the combination of behaviors and the degree to which he did them that combined to make him clearly ASD and to at times really mess with him and us.

Yes, I think there is enough, to give him that label when all is considered, it just so happens that all the factors that form the label are in the "Other characteristics of autism" category.  There are a couple in the "Social Communication" part.  He does not often ask for clarifications, and he did talk aloud when he was a preschooler but not since then.

 

My difficulty may be the reorganization of the label.  Since it is a spectrum, two people on the spectrum can in theory look very different and have different characteristics.  I am still functioning under the autism=..., inability to function in society label.  As I mentioned before, I have many more characteristics than he does yet nobody has ever suggested I am autistic.  Dang it, I want a clear definition of what autism is :-)  

 

In addition, there are probably characteristics that weigh heavier than others.  I know if I were a child today, I would not do well. 

 

This thread has put much of it together for me.  The ASD spectrum encompasses so much that I am still not clear on why ADD and dysgraphia were mentioned separately.  Wouldn't a simple ASD diagnosis be enough then if the symptoms and characteristics overlap?  Does it matter whether his lack of organization is due to ADD or ASD? (for example, does one diagnosis open a wider range of possible support than the other or do they have a different origin and therefore need to be treated differently?) Are any of these disorders ever diagnosed without ASD? 

I think if I read the books posters suggested I will have many of my questions answered.

 

Now I am curious what the legal implications of that diagnosis are, I have to read up on that.  For example, can a potential employer ask about it during an interview?  Could he be fired because of behaviors due to that diagnosis?

 

 

Oh, and for the person who said start a thread on "normal teen or ASD", my ds would always have been labeled as normal from a written description. When I tried to describe his issues to friends, they always said, "My kids do that too." There weren't any behaviors that were unusual. It was the combination of behaviors and the degree to which he did them that combined to make him clearly ASD and to at times really mess with him and us.

 

That makes total sense. That goes back to what Oh Elizabeth said.  I may not see it because I am worse than he is so to me he seems normal and to others he seems normal.  I have always looked at his behaviors separately, not as a package of certain combinations.

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I didn't realize you weren't in the States!  That's probably why your report doesn't list things.  Here, a children's hospital report for a dc that age would list the recommended services, discussion transition services, etc.  So that's a really good plan to make an appt with a behaviorist/BCBA for when you get back and have a sitdown and let them go through it with you.  They can do some questionnaires and help you make a game plan.

We were in the States when it was done.  We moved the day after I received the report.  I haven't done much with it over the past few months because there was so much going on and homeschooling has made dealing with some things less urgent.

 

I also may have filled out the questionnaires incorrectly (didn't learn that until a few days ago when I had to fill out a health form for myself.  How was I supposed to know that when they say "ever" they mean more than 4 times a year or more than once every 3 months.  They made me redo the whole survey.)  I really think a behaviorist is our best plan of action, they will be able to puzzle out which behaviors are of concern and which aren't. From there we can form a plan of support and accommodations as needed.  Honestly, it is a real relief to have some idea of what to do and where to go.  I will still pursue the physical aspect, building muscle and core strength cannot be wrong, and I figure working on vision and fine motor skills will in the worst case do nothing and in the best improve life in some way.

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If you are active duty I suggest going to the EFMP office and asking there.

I talked to them.  They said that since he already has an ASD diagnosis they need some sort of form from the school counseling office, regardless whether he is homeschooled or not. They will contact Soandso and EFMP will take it form there.  I have an appointment with the counselor in a few days.

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Hi there, I'm not sure if this will help you at all, and I did not take the time to read through each response - but I wanted to just mention that I was diagnosed with aspergers syndrome a few years ago, in my late 20's. By the time I was diagnosed, I had already gotten my bachelors degree, worked for about a decade, gotten married, purchased my first home, and had my first child. I suppose a little bit of guidance with social things and stress management would have been nice along the way, but I just wanted to point out that I didn't necessarily need any help. My autism traits are all so mild that they do not interfere with my ability to function in any significant way. I fidget a lot, I have obsessions, I'm not great with people, noise bothers me, etc., but for me, these are almost more like personality traits than anything else. Don't get me wrong, this is not the case for everyone on the spectrum. I have an autistic child who is more on the disabled side, and he has required a lot of help. For some of us, though, it's not quite as disabling or even very obvious on the surface. 

It does help.  I have always thought of myself as normal.  I hit many of the markers but I too have always thought of it as personality traits, not a brain disorder.  It certainly never occurred to me I needed help.  I figured I just needed to find a job and living situation that suited me (which I did).

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Aha. I assume his verbal scores are higher than his visual spatial scores? That is a nonverbal learning disorder profile (NVLD or sometimes abbreviated NLD). Because NVLD is not in the DSM, some psychs will not diagnose it. You can find a lot of information online, if you don't know about it, or I can go through my bookmarks and give you a few suggestions.

 

NVLD is kind of on the border of the autism spectrum. Some people would give the NVLD child an Asperger's label (if it still existed), though not everyone who has Asperger's has NVLD. Others say that it is not autism but it's own thing. (I've come to think that NVLD has a spectrum of its own, with mild to severe cases, and that the more severe it is, the closer it comes to looking like ASD.)

 

DS12 has NVLD. I had never heard of it before his diagnosis. It's not as well known. DS12 can seem like he is on the spectrum. And he can seem like he is not.

His verbal scores are in the 95th-98th percentile, (very high to very superior), visual scores are in the 16th to 1st percentile (low average to extremely low), processing speed is in the 3rd percentile (very low), working memory is in the 95th percentile (superior).  He is also extremely nearsighted and vision is getting worse fast.

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For EFMP, I didn't mean just enrolling in EFMP.

 

If you want a behaviorist, then they should (may, lol) have information about enrolling in the Tricare autism program to get ABA. That is what you may want if you want a behaviorist.

 

I do not know the name of the program right now, it changes often. It has been called the Echo Demonstration Program (unless I just made that up lolololol) or the Autism Demonstration Program or something else now. That is for ABA.

 

For speech or OT as far as I know (for me) I take an IEP to the doctor and get a referral that way.

 

Ideally the people at EFMP would be able to tell you how to get these services you qualify for now with an ASD diagnosis.

 

Or ideally the doctor would know about options and recommend what options would be helpful when you take him for his EFMP physical if you do that.

 

I just did a 3-year re-enrollment for EFMP and went for another physical for my son. It is really just a chance for them to see if you are in services that are working out.

 

But the doctor I saw did not seem to totally agree with the choices I am making, but I think just from a lack of familiarity with the options, and with what I am happy with getting through school and not through a private therapist.

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What I mean is, if you go into EFMP just to do enrollment, maybe they won't tell you every service option or assume you don't want a behaviorist at his age.

 

But if you are interested, then they might be able to tell you how to enroll. It is a lot of paperwork and you would do the paperwork prior to getting a provider anyway.

 

And then for OT or speech, that is a referral through the doctor, and not the same procedure as for ABA (or wasn't a few years ago, but it may be changed now, there are a lot of changes, but it doesn't matter for me bc I already have a service provider).

 

That is if you want to pursue it. I could see it going either way, for deciding what you want to pursue.

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For EFMP, I didn't mean just enrolling in EFMP.

 

If you want a behaviorist, then they should (may, lol) have information about enrolling in the Tricare autism program to get ABA. That is what you may want if you want a behaviorist.

 

I do not know the name of the program right now, it changes often. It has been called the Echo Demonstration Program (unless I just made that up lolololol) or the Autism Demonstration Program or something else now. That is for ABA.

 

For speech or OT as far as I know (for me) I take an IEP to the doctor and get a referral that way.

 

Ideally the people at EFMP would be able to tell you how to get these services you qualify for now with an ASD diagnosis.

 

Or ideally the doctor would know about options and recommend what options would be helpful when you take him for his EFMP physical if you do that.

 

I just did a 3-year re-enrollment for EFMP and went for another physical for my son. It is really just a chance for them to see if you are in services that are working out.

 

But the doctor I saw did not seem to totally agree with the choices I am making, but I think just from a lack of familiarity with the options, and with what I am happy with getting through school and not through a private therapist.

I already talked to the doctor about a referral for OT, they wouldn't write one.  I will mosey back to EFMP and inquire a little more persistently :-)

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That kind of discrepancy between verbal and nonverbal scores is a classic defining diagnostic criteria for NVLD. Here is one article for you to read.

http://www.ldonline.org/article/6114

 

NVLD is complex. It took me a long time to read and digest information about it. At first I doubted DS's diagnosis (we thought he was going to be diagnosed with ASD), but now I think it is spot on. Even so, we continue to consider having him reevaluated to see if he would get an ASD diagnosis from someone else. To be honest, having the ASD diagnosis in addition to the NVLD would be helpful for getting services.

 

I really encourage you to read about NVLD, because it has its own profile separate from ASD.

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I have to say I feel like I have gotten the run-around, with people making assumptions like "of course you know about such-and-such" and "of course you do/don't want to do such-and-such" instead of laying out information in a helpful way!

 

If the doctor won't write a referral for OT, what do you need to qualify for a referral? It may really mean you need to do 3 things or 5 things (lol) and then take your info to the doctor and then you get the referral.

 

Locally I heard there was a doctor (still on post etc) who some people liked to transfer to, but I have never seen the need. But if you hear that a certain doctor is more knowledgable then it might be worthwhile.

 

This is just a thought, but if you are overseas maybe some people do not get assigned there and there is not as much experience.

 

Right now (for us personally, and it is not really similar) my husband would not get an accompanied overseas tour, only unaccompanied. Right now that is what the code on his EFMP paperwork is showing (I could be confused about this, this is my understanding). But I think they still provide services for kids who get diagnosed overseas, they just don't send people who have certain codes. I am vague on this, but the EFMP person would know.

 

Just, I have heard of another person who did not find out about all available programs and services at her last location, even though she went through EFMP enrollment. They just were not aware or did not communicate her options to her, and then she found out when she moved here and feels like she missed out on some things before.

 

But this is as far as I know: if you want a behaviorist, this may mean you want an ABA provider. This may mean you want to be in the Tricare program that covers ABA.

 

I could see you needing to say the name of the program (I would try googling autism Tricare or ABA Tricare, or look for military info on the autism speaks website). They might not hear you say "behaviorist" and connect that to "the title of this program." And I am sorry if my info is super-dated even though it is all within the past 4 years.

 

You also might not want an ABA provider, you might want a psychologist instead. I don't really know how to get a referral to a psychologist, I have never done it lol.

 

My son has had ABA, speech, and OT.

 

But maybe you want a psychologist and OT -- I don't know. Without a recommendation from the report it is hard to say. If they knew you were moving maybe that is why they didn't include that????? You might be able to ask about getting an appointment with some kind of doctor who could look at the paperwork and recommend stuff.

 

I just found out recently my son could have an annual appointment with a dev pediatrician, and they don't count it as the same thing as the testing. Maybe -- I could have that confused also.

 

It is worth asking, maybe.

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Yeah, Tricare can be confuzzling.  Our assigned doctor did some basic checks and said he doesn't seem impaired enough to warrant the referral.  The codes shouldn't be a problem, when we went through our overseas screening, they said they were looking for diseases like cancer, congestive heart failure and such.  OT, PT,.. are all available if one qualifies.

 

The referral to the psych comes through the family doctor.  

 

Taking in the report is a good idea.

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That is good.

 

And ask at the EFMP office! I think there may be more choices than what this doctor said.

 

Or maybe you could have an OT assessment through public school? If there are sensory issues, maybe you could fill out a sensory inventory?

 

Did I already mention, if it is that subjective (as it comes across) you can also ask around and change to a different doctor. I would only do it, probably, if I heard that this doctor is known for not giving referrals, and that another doctor is known for giving referrals, or something like that. Or else hearing one is better for autism and others have had a similar issue with yours. I have never done it but it is something people do, I guess.

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Separately locally I would use behaviorist to mean a certified ABA therapist (a BCBA). I would not mean a psychologist.

 

But I think it is a broad term, too. I am just used to it having that meaning.

 

So if you want a psychologist, then it sounds a lot easier to get a doctor referral than to have to go through all the paperwork needed for ABA. Plus I do think there are psychologists everywhere but not necessarily a BCBA.

 

But if locally there is a great therapist in any field who works with kids the age/level of your son ----- I think that can be worth looking at regardless of the field it seems like you would want. You might find that there is a great speech therapist who would be helpful, even if that is not on your radar.

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Now I am curious what the legal implications of that diagnosis are, I have to read up on that.  For example, can a potential employer ask about it during an interview?  Could he be fired because of behaviors due to that diagnosis?

 

No. They can't ask and he can't be fired because of it. It is covered under ADA - considered a disability. 

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