Diagnosing high functioning autism in an older child

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP here. One point of clarification. The reason the therapist said it would be atypical is because he makes eye contact. She knows him well and has HFA as a speciality but just raised the possibility recently.

My kid with ASD/ADHD never had issues with eye contact. His eye contact has always been normal and he certainly has ASD /Asperger's according to ADOS and neuropsych eval. Eye contact is not the "be all, end all" in diagnosing ASD.

Get a neuropsych eval with ADOS/ADI-R. Frankly, I would find another therapist if yours used eye contact solely as determining "atypical".

Want to add that DS got the ADHD diagnosis in addition to the ASD, which was diagnosed earlier, from Dr Black. He truly is an expert in "complicated" cases like my DS. Highly recommend.

And DS is empathic but has trouble reading social cues. He tells jokes too but he has been getting supports including social skills classes and pragmatic speech therapy since he was 4 now 9.

[Anonymous]

OP here. Thanks so much for all of the feedback. It is very helpful.

My son has a very hard time with social skills and with fitting in. He does have a couple of friends but he has a hard time with basic skills like saying hello or goodbye. He is very awkward outside of the home environment and very uncomfortable outside of the home. He is highly sensitive, both emotionally and to any strange smells, tastes, etc. He doesn't have a typical level of life skills either and is very clumsy. I could go on and on and I realize that I should just have him evaluated.

I am a bit frustrated that after he's spent so many years in therapy (since he started school) and on medication that possibilities other than anxiety are just being raised now.

[Anonymous]

Anonymous wrote:OP here. Thanks so much for all of the feedback. It is very helpful.

My son has a very hard time with social skills and with fitting in. He does have a couple of friends but he has a hard time with basic skills like saying hello or goodbye. He is very awkward outside of the home environment and very uncomfortable outside of the home. He is highly sensitive, both emotionally and to any strange smells, tastes, etc. He doesn't have a typical level of life skills either and is very clumsy. I could go on and on and I realize that I should just have him evaluated.

I am a bit frustrated that after he's spent so many years in therapy (since he started school) and on medication that possibilities other than anxiety are just being raised now.

Don't beat yourself up. It is very common for Asperger's (which now exists as ASD, level 1, in the DSM-5) to be diagnosed in older kids or even as an adult. And anxiety is commonly comorbid. Better late than never.... Go see Dr David Black if you live in this area. He is the area's expert on Asperger's.

[Anonymous]

Anonymous wrote:

Anonymous wrote:OP here. Thanks so much for all of the feedback. It is very helpful.

My son has a very hard time with social skills and with fitting in. He does have a couple of friends but he has a hard time with basic skills like saying hello or goodbye. He is very awkward outside of the home environment and very uncomfortable outside of the home. He is highly sensitive, both emotionally and to any strange smells, tastes, etc. He doesn't have a typical level of life skills either and is very clumsy. I could go on and on and I realize that I should just have him evaluated.

I am a bit frustrated that after he's spent so many years in therapy (since he started school) and on medication that possibilities other than anxiety are just being raised now.

Don't beat yourself up. It is very common for Asperger's (which now exists as ASD, level 1, in the DSM-5) to be diagnosed in older kids or even as an adult. And anxiety is commonly comorbid. Better late than never.... Go see Dr David Black if you live in this area. He is the area's expert on Asperger's.

+1. For what it's worth, our 12 DS has significant anxiety and trouble fitting in, but does have friends. Our therapist likewise floated the Aspergers possibility, but also said her treatment approach would essentially be the same if the diagnosis is confirmed. She said a neuro assessment may be worthwhile if we planned to advocate for school accommodations, but otherwise we might save our money.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP here. Thanks so much for all of the feedback. It is very helpful.

My son has a very hard time with social skills and with fitting in. He does have a couple of friends but he has a hard time with basic skills like saying hello or goodbye. He is very awkward outside of the home environment and very uncomfortable outside of the home. He is highly sensitive, both emotionally and to any strange smells, tastes, etc. He doesn't have a typical level of life skills either and is very clumsy. I could go on and on and I realize that I should just have him evaluated.

I am a bit frustrated that after he's spent so many years in therapy (since he started school) and on medication that possibilities other than anxiety are just being raised now.

Don't beat yourself up. It is very common for Asperger's (which now exists as ASD, level 1, in the DSM-5) to be diagnosed in older kids or even as an adult. And anxiety is commonly comorbid. Better late than never.... Go see Dr David Black if you live in this area. He is the area's expert on Asperger's.

+1. For what it's worth, our 12 DS has significant anxiety and trouble fitting in, but does have friends. Our therapist likewise floated the Aspergers possibility, but also said her treatment approach would essentially be the same if the diagnosis is confirmed. She said a neuro assessment may be worthwhile if we planned to advocate for school accommodations, but otherwise we might save our money.

Thank you both. My son does have a 504 alreafy so I am not sure the diagnosis would make a difference.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP here. Thanks so much for all of the feedback. It is very helpful.

My son has a very hard time with social skills and with fitting in. He does have a couple of friends but he has a hard time with basic skills like saying hello or goodbye. He is very awkward outside of the home environment and very uncomfortable outside of the home. He is highly sensitive, both emotionally and to any strange smells, tastes, etc. He doesn't have a typical level of life skills either and is very clumsy. I could go on and on and I realize that I should just have him evaluated.

I am a bit frustrated that after he's spent so many years in therapy (since he started school) and on medication that possibilities other than anxiety are just being raised now.

Don't beat yourself up. It is very common for Asperger's (which now exists as ASD, level 1, in the DSM-5) to be diagnosed in older kids or even as an adult. And anxiety is commonly comorbid. Better late than never.... Go see Dr David Black if you live in this area. He is the area's expert on Asperger's.

+1. For what it's worth, our 12 DS has significant anxiety and trouble fitting in, but does have friends. Our therapist likewise floated the Aspergers possibility, but also said her treatment approach would essentially be the same if the diagnosis is confirmed. She said a neuro assessment may be worthwhile if we planned to advocate for school accommodations, but otherwise we might save our money.

Thank you both. My son does have a 504 alreafy so I am not sure the diagnosis would make a difference.

You can try to get an IEP: My son gets OT, social skills, pragmatic speech therapy (will help with "hello", "goodbye", jokes, irony, etc) and got PT when he was younger, all at school. Gets lots of social supports and is a popular kid with friends and well liked by classmates fully mainstreamed at a dual language school.

The OT and PT helped with DS's clumsiness. The OT taught him to touch type in second grade and also to tie his shoes and use utensils when younger while the PT taught him to climb playground equipment and to dribble a ball among other things.

DS has always been above grade level academically and excels at an elite level in his hobby. Getting the supports at school has been wonderful for his self confidence and if ASD is suspected, there can also be other issues like ADHD, learning disability in written expression, anxiety, etc. it was definitely worth the expense to get a neuropsych eval for us.

Getting a diagnosis has only helped DS.

[Anonymous]

Anonymous wrote:OP here. Thanks so much for all of the feedback. It is very helpful.

My son has a very hard time with social skills and with fitting in. He does have a couple of friends but he has a hard time with basic skills like saying hello or goodbye. He is very awkward outside of the home environment and very uncomfortable outside of the home. He is highly sensitive, both emotionally and to any strange smells, tastes, etc. He doesn't have a typical level of life skills either and is very clumsy. I could go on and on and I realize that I should just have him evaluated.

I am a bit frustrated that after he's spent so many years in therapy (since he started school) and on medication that possibilities other than anxiety are just being raised now.

The reality is that even if he has ASD, it's not like there are any magic bullets. It sounds like you'd do pretty much what you're already doing. My ds is 11 and sounds similar; he's had the dx since age 3. We've done social skills groups and seen a psychologist, but the social stuff is still hard, he is still highly sensitive to strange smells, he still is awkward, etc., etc.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP here. Thanks so much for all of the feedback. It is very helpful.

My son has a very hard time with social skills and with fitting in. He does have a couple of friends but he has a hard time with basic skills like saying hello or goodbye. He is very awkward outside of the home environment and very uncomfortable outside of the home. He is highly sensitive, both emotionally and to any strange smells, tastes, etc. He doesn't have a typical level of life skills either and is very clumsy. I could go on and on and I realize that I should just have him evaluated.

I am a bit frustrated that after he's spent so many years in therapy (since he started school) and on medication that possibilities other than anxiety are just being raised now.

Don't beat yourself up. It is very common for Asperger's (which now exists as ASD, level 1, in the DSM-5) to be diagnosed in older kids or even as an adult. And anxiety is commonly comorbid. Better late than never.... Go see Dr David Black if you live in this area. He is the area's expert on Asperger's.

+1. For what it's worth, our 12 DS has significant anxiety and trouble fitting in, but does have friends. Our therapist likewise floated the Aspergers possibility, but also said her treatment approach would essentially be the same if the diagnosis is confirmed. She said a neuro assessment may be worthwhile if we planned to advocate for school accommodations, but otherwise we might save our money.

Thank you both. My son does have a 504 alreafy so I am not sure the diagnosis would make a difference.

You can try to get an IEP: My son gets OT, social skills, pragmatic speech therapy (will help with "hello", "goodbye", jokes, irony, etc) and got PT when he was younger, all at school. Gets lots of social supports and is a popular kid with friends and well liked by classmates fully mainstreamed at a dual language school.

The OT and PT helped with DS's clumsiness. The OT taught him to touch type in second grade and also to tie his shoes and use utensils when younger while the PT taught him to climb playground equipment and to dribble a ball among other things.

DS has always been above grade level academically and excels at an elite level in his hobby. Getting the supports at school has been wonderful for his self confidence and if ASD is suspected, there can also be other issues like ADHD, learning disability in written expression, anxiety, etc. it was definitely worth the expense to get a neuropsych eval for us.

Getting a diagnosis has only helped DS.

My son has both ASD/ADHD and the ADHD, combined type, causes more issues and problems than the Asperger's ever did. Thankfully, you can take medication for the ADHD but we would not have known that DS had ADHD without the neuropsych eval. DS does not have anxiety however. Many of DS's issues that we attributed to ASD disappeared after DS was medicated for his ADHD.

A lot of these conditions look similar. Getting a neuropsych eval will help you sort it out and come up with a treatment plan.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP here. Thanks so much for all of the feedback. It is very helpful.

My son has a very hard time with social skills and with fitting in. He does have a couple of friends but he has a hard time with basic skills like saying hello or goodbye. He is very awkward outside of the home environment and very uncomfortable outside of the home. He is highly sensitive, both emotionally and to any strange smells, tastes, etc. He doesn't have a typical level of life skills either and is very clumsy. I could go on and on and I realize that I should just have him evaluated.

I am a bit frustrated that after he's spent so many years in therapy (since he started school) and on medication that possibilities other than anxiety are just being raised now.

Don't beat yourself up. It is very common for Asperger's (which now exists as ASD, level 1, in the DSM-5) to be diagnosed in older kids or even as an adult. And anxiety is commonly comorbid. Better late than never.... Go see Dr David Black if you live in this area. He is the area's expert on Asperger's.

+1. For what it's worth, our 12 DS has significant anxiety and trouble fitting in, but does have friends. Our therapist likewise floated the Aspergers possibility, but also said her treatment approach would essentially be the same if the diagnosis is confirmed. She said a neuro assessment may be worthwhile if we planned to advocate for school accommodations, but otherwise we might save our money.

Thank you both. My son does have a 504 alreafy so I am not sure the diagnosis would make a difference.

You can try to get an IEP: My son gets OT, social skills, pragmatic speech therapy (will help with "hello", "goodbye", jokes, irony, etc) and got PT when he was younger, all at school. Gets lots of social supports and is a popular kid with friends and well liked by classmates fully mainstreamed at a dual language school.

The OT and PT helped with DS's clumsiness. The OT taught him to touch type in second grade and also to tie his shoes and use utensils when younger while the PT taught him to climb playground equipment and to dribble a ball among other things.

DS has always been above grade level academically and excels at an elite level in his hobby. Getting the supports at school has been wonderful for his self confidence and if ASD is suspected, there can also be other issues like ADHD, learning disability in written expression, anxiety, etc. it was definitely worth the expense to get a neuropsych eval for us.

Getting a diagnosis has only helped DS.

I think this PP is a great parent but you should know that it is highly unusual to get this level of support for a child who is above grade level academically. I would only do the evaluation if you think it will help your own peace of mind or your child's peace of mind or change the treatment course (although this doesn't seem likely either) rather than any hopes about extra school support.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP here. Thanks so much for all of the feedback. It is very helpful.

My son has a very hard time with social skills and with fitting in. He does have a couple of friends but he has a hard time with basic skills like saying hello or goodbye. He is very awkward outside of the home environment and very uncomfortable outside of the home. He is highly sensitive, both emotionally and to any strange smells, tastes, etc. He doesn't have a typical level of life skills either and is very clumsy. I could go on and on and I realize that I should just have him evaluated.

I am a bit frustrated that after he's spent so many years in therapy (since he started school) and on medication that possibilities other than anxiety are just being raised now.

Don't beat yourself up. It is very common for Asperger's (which now exists as ASD, level 1, in the DSM-5) to be diagnosed in older kids or even as an adult. And anxiety is commonly comorbid. Better late than never.... Go see Dr David Black if you live in this area. He is the area's expert on Asperger's.

+1. For what it's worth, our 12 DS has significant anxiety and trouble fitting in, but does have friends. Our therapist likewise floated the Aspergers possibility, but also said her treatment approach would essentially be the same if the diagnosis is confirmed. She said a neuro assessment may be worthwhile if we planned to advocate for school accommodations, but otherwise we might save our money.

Thank you both. My son does have a 504 alreafy so I am not sure the diagnosis would make a difference.

You can try to get an IEP: My son gets OT, social skills, pragmatic speech therapy (will help with "hello", "goodbye", jokes, irony, etc) and got PT when he was younger, all at school. Gets lots of social supports and is a popular kid with friends and well liked by classmates fully mainstreamed at a dual language school.

The OT and PT helped with DS's clumsiness. The OT taught him to touch type in second grade and also to tie his shoes and use utensils when younger while the PT taught him to climb playground equipment and to dribble a ball among other things.

DS has always been above grade level academically and excels at an elite level in his hobby. Getting the supports at school has been wonderful for his self confidence and if ASD is suspected, there can also be other issues like ADHD, learning disability in written expression, anxiety, etc. it was definitely worth the expense to get a neuropsych eval for us.

Getting a diagnosis has only helped DS.

I think this PP is a great parent but you should know that it is highly unusual to get this level of support for a child who is above grade level academically. I would only do the evaluation if you think it will help your own peace of mind or your child's peace of mind or change the treatment course (although this doesn't seem likely either) rather than any hopes about extra school support.

OP here. If it were determined that he had ADD, then that would likely affect which medications he takes. Currently everyone has assumed it is only anxiety.

[Anonymous]

An ADHD diagnosis might prompt a change in meds however, anxiety is a component of ADHD as well, so he might end up on a regime to treat a combination of things. (Also, kids with ADHD can be socially awkward as well b/c impulsivity or anxiety can interfere with interpersonal relationships.)

Would a neuropsych evaluation put an undue burden on you financially, OP? If it's for clarification of medication, you may be able to get it covered or at least in part. That is something worth exploring with your insurance. Maybe going through KKI or Childrens may help with reimbursement as well. (Your therapist may have some insights as well.)

If he hasn't been re-assessed recently, I would do it. It will inform medications may allow you to advocate for an IEP with more supports.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP here. Yes, it's a boy. Therapist did say that it would be an atypical case. There are some things that do resonate. But he is very empathetic (almost too empathetic because it causes him distress). He also has a very good sense of humor, more sophisticated than most kids. But he is very awkward with other kids. He is extremely disorganized and some other random things on lists I read resonated (like clumsiness, low pain threshold, extremely sensitive to his environment, can't handle crowds or weird smells, etc). But it was really the social piece that therapist focused on.

It is a myth that kids with ASDs lack empathy. They often don't demonstrate empathy because they lack the ability to read facial expressions and body language and social cues. When they understand what is happening with another person, they often have plenty of empathy. It's a perception problem, not a lack of emotional response.

+1 . I get so frustrated by this "lack of empathy" canard. My kid has a big, warm heart. Just absolutely no idea how to translate that appropriately to social interactions because he can't read the signals people are sending.

Another +1 here. I have several children, and DC on the spectrum is extremely empathetic, just also very poor at reading when, where, how to respond and express appropriately.

[Anonymous]

Anonymous wrote:OP here. Yes, it's a boy. Therapist did say that it would be an atypical case. There are some things that do resonate. But he is very empathetic (almost too empathetic because it causes him distress). He also has a very good sense of humor, more sophisticated than most kids. But he is very awkward with other kids. He is extremely disorganized and some other random things on lists I read resonated (like clumsiness, low pain threshold, extremely sensitive to his environment, can't handle crowds or weird smells, etc). But it was really the social piece that therapist focused on.

Most of those are really soft signs. There's a lot of disorganized people who are not autistic. There are also a lot of socially awkward people too.
If he very bright by any chance? Does he do better in a friend group that he would fit in with?
Such as kids who like science or robotics or caring for animals? Whatever he's interested in?


It's really in the severity of his responses. Does he have a long tantrum or otherwise extreme reaction to things like crowds or other kids?

Does he use speech appropriately? Does he quote movie scripts of steer the topic to his primary interest all the time?

Autistic people often have anxiety but it's more than that.

I'd take him to a doctor or team of doctors if you have him evaluated. Someone without an agenda - if look at your local Children's hospital.

[Anonymous]

Anonymous wrote:OP here. Thanks so much for all of the feedback. It is very helpful.

My son has a very hard time with social skills and with fitting in. He does have a couple of friends but he has a hard time with basic skills like saying hello or goodbye. He is very awkward outside of the home environment and very uncomfortable outside of the home. He is highly sensitive, both emotionally and to any strange smells, tastes, etc. He doesn't have a typical level of life skills either and is very clumsy. I could go on and on and I realize that I should just have him evaluated.

I am a bit frustrated that after he's spent so many years in therapy (since he started school) and on medication that possibilities other than anxiety are just being raised now.

Well, getting diagnosed now versus later just might mean that this is more of a long term thing. Perhaps.
Anxiety might be too, I don't know.

It sounds like you've been doing good therapies for him whatever he has. It doesn't sound like its been improving his life enough so a new evaluation with a new professional to help guide you is probably a great idea.
Try the neuropsych. Have a doctor that gets to know him guiding you sounds like a great idea.

[Anonymous]

Anonymous wrote:An ADHD diagnosis might prompt a change in meds however, anxiety is a component of ADHD as well, so he might end up on a regime to treat a combination of things. (Also, kids with ADHD can be socially awkward as well b/c impulsivity or anxiety can interfere with interpersonal relationships.)

Would a neuropsych evaluation put an undue burden on you financially, OP? If it's for clarification of medication, you may be able to get it covered or at least in part. That is something worth exploring with your insurance. Maybe going through KKI or Childrens may help with reimbursement as well. (Your therapist may have some insights as well.)

If he hasn't been re-assessed recently, I would do it. It will inform medications may allow you to advocate for an IEP with more supports.

OP,

I just wanted to add not to be too hard on yourself; no matter what the outcome. Sometimes we can only chip away big by bit and don't get a big reveal as to what's always going on with our kids. You sound like a caring, responsible parent doing the best for your kid. Hang in there.