Not diagnosed on the spectrum until age 12?

[Mickeyhead12]

I've belonged to the boards for years but I'm posting under a new name because sometimes people aren't very nice on the other boards and stalk posts to find out about people.

My daughter is 12 and was diagnosed with generalized anxiety disorder when she was 8. They added panic disorder when she was 10. Now she's 12, in 7th grade and having a very difficult time. She's taken zoloft for years but it's no longer working. We can't increase the dose because it causes agitation. We're waiting to have a psychological eval done and are meeting with a new psychiatrist this coming week to explore new medications and possibly a new diagnosis. The psychologist doing the eval observed her in school last spring, has rating scales completed by us and the school, and met her over the summer when we tried to get the eval done but DD was too anxious. She said at a recent PPT that her "working diagnosis" is somewhere on the spectrum on top of the anxiety. I forgot to mention that she was also diagnosed with SPD in 4th grade.

This diagnosis makes sense in some ways but I'm wondering if anyone else has a child who was diagnosed at this age (or older). She is a very social girl who makes friends easily but has difficulty keeping them sometimes. She has black and white thinking and when she gets mad at someone she stays mad.

I wish we could get a diagnosis and make a plan quickly but it just doesn't work that way. She was having such difficulty getting into school (meltdowns in the car etc) that she's on homebound until we get this all under control.

Thanks for listening!

 

[bookwormde]

I have lots of kids I work with who did not receive a spectrum diagnosis till 12 or later. All of them had significant alphabet soup diagnosis (Anxiety, OCD ODD, PTSD, RAD etc) before they were properly diagnosed.
"somewhere on the spectrum on top of the anxiety" while time accrete is an upside down way of thinking about your daughter. She has an anxiety disorder because she is an unsupported ASD individual. ASD is the primary diagnosis and Anxiety is a co morbid secondary diagnosis due to the fact she was never seen by clinician with a reasonable level of competency for ASD in girls. She has exhibited all the classic signs, although those who are not highly competent would be confused by her self adaptive social skills and did not look deep enough into the atypically of her social skill presentation.
I have had lots of kids that once they and their parents new that they were HFA/Aspegers and started to get the supports and skill development in place the co morbid condition subsided to subclinical levels very quickly (in as little as a couple of weeks to as much as 6 months). Do not add more medicines unless there is a critical need since this will make the "recovery" much harder".
Start with working on the basic 3 areas of ASD, understand an manage her sensory needs, understand support her different executive function style, and get social skill support appropriate for a highly adaptive ASD child. Her becoming self aware of her amazing gifts as an ASD genetics individual and the what and why of the challenges she has faced all these years is very liberating to our kids is a big part of the turnaround..
Get and read a copy of Tony Attwood's "the complete guide to Aspergers" and a copy of "Genius genes" both are available on Amazon for about $15 each.
bookwormde

 

[Mickeyhead12]

Thank you bookwormde. Things have been so crazy lately that it's very overwhelming. DD has been having meltdowns/tantrums (I don't know what to call them anymore- crying, yelling, hitting the seat in the car, hitting the front door when my mom had to leave earlier than she expected "I had it all planned and now she's leaving") over things but it really seems like it happens when she's backed into a corner over something- like having to go into school when she's too anxious to go or when something changes and things don't go as planned. The more anxious she is the more inflexible she is. I actually had a friend who is a DCF social worker who has known DD since she was born tell me she thinks DD may be seriously mentally ill. It broke my heart (and made me very angry). She's such a sweet girl- very affectionate and extremely empathetic but when she is pushed to do something she doesn't want (or can't?) do she is now shutting down and refusing to get out of the car or acting out. This doesn't happen often but when it does it is very upsetting for everyone. The psychologist doing the eval said she thinks part of the problem is that DD has learned maladaptive behaviors to deal with life. I'm hoping having a clear diagnosis can help everyone involved come up with a good plan to help her.

One example of her rigidity is that she's on homebound tutoring- meeting her science teacher at the library a few afternoons a week depending on the teacher's schedule. Tuesday is a professional dev day so the other kids don't have school. When the teacher said she'd be available that afternoon DD got upset because there's not supposed to be school that day. I decided it wasn't worth the battle to get her there and we just started so I want to keep things positive so we didn't schedule her for Tuesday.

I think at this point she definitely needs anxiety medicine. She is anxious about everything. She choked a little on a brownie a couple of weeks ago and the other night asked me if it was okay to worry about swallowing sometimes. It's getting worse all the time.

I'm going to check out the books you recommended. Thank you so much- it helps when someone understands.

 

[bookwormde]

The massive stress that our kids are under when thay are not understood, has the same impact as events that creat PTSD. What you are seeing is very real and damaging.

The good news is that is very "treatable" once you get to the root cause which is her ASD genetics and their interface with the neurotypical world and everyone's expectiaion that she should be neurotypical.

Our kids are not good with chnage since they do not have the natural abilility to adapt to new situations easily, and the manefestaions you are seeing is her attempt to protect herself w hen beinf forced into situations that whe belives she does not have the skills to manage.

She is an amazing child with amazing gifts both intellectually and in her concern about the world around her, it will get better very fast once you are on ther "right track"

If you can find a supprt group for parents of HFA/Aspergers kids it will likely help you a lot.

bookwormde

 

[saveaquarter]

Late spectrum diagnoses are not uncommon at all. My husband wasn't officially diagnosed with Aspergers until his 30s!

Have patience and faith, and know you're not alone, that's really the best advice I can offer. Take advantage of the wealth of literature available, and never accept anything short of your child being happy as "good enough". It's overwhelming and scary but there's invaluable support to be found

 

[Mickeyhead12]

Thank you both so much. Right now DD is on homebound tutoring about 3 afternoons a week (although this week only Friday works) and during the day she's home with my mom. We are very lucky that my mom is able to come down and stay during the week. DD still has a hard time letting me leave to go to work in the morning but hopefully that will get better too. It's hard having her home during the day because she's a kid who HAS to be busy all the time. She said she needs something to do during the school day because she doesn't want to just sit home watching Sponge Bob

Something that's been helping DD deal with life is horseback riding and volunteering at the horse farm. It's a rescue farm that has all kinds of animals and she loves it there! The staff have been wonderful working with her. She volunteers one afternoon to help with a special needs lesson and she loves it. She also volunteers on Saturdays to help clean up, feed the animals, lead pony rides for birthday parties etc. It's been a very therapeutic experience for her.

I'm going to download some books tonight and do research. I teach high school special ed but don't have experience with aspergers/HF spectrum girls. There is a sensory processing support/parent group in our area and I think I'll start trying to go to their meetings.

Thanks again!

 

[Mickeyhead12]

Update-

DH and I met with the new psychiatrist yesterday. We gave her the background info and then told her about the clinical psychologist's "working diagnosis" of autism spectrum. She said it would be unusual for DD to be so social and be on the spectrum. I told her about what I read in the Tony Attwood's book about girls on the spectrum seeking social interactions and dealing with them intellectually. He also says how when they get older the social demands get to be too much and they can't keep up.

We also explained that she is not willing or can't talk about what stresses her out or talk about school and that she might not be willing to get out of the car for her appointment next week. She said she'd go out to the car to talk to her and asked what kind of games she likes and if it would be better to take a walk with her instead.

DD was very upset with my mom about something during the day and ended up calling me during the appointment VERY upset. She was crying and refusing to go the horse farm with my mom. I think it was good for the Dr to hear her. She eventually calmed down and went.

Keeping my fingers crossed that we get this diagnosed soon and get things under control.

 

[itsheresomewhere]

Update-

DH and I met with the new psychiatrist yesterday. We gave her the background info and then told her about the clinical psychologist's "working diagnosis" of autism spectrum. She said it would be unusual for DD to be so social and be on the spectrum. I told her about what I read in the Tony Attwood's book about girls on the spectrum seeking social interactions and dealing with them intellectually. He also says how when they get older the social demands get to be too much and they can't keep up.

We also explained that she is not willing or can't talk about what stresses her out or talk about school and that she might not be willing to get out of the car for her appointment next week. She said she'd go out to the car to talk to her and asked what kind of games she likes and if it would be better to take a walk with her instead.


DD was very upset with my mom about something during the day and ended up calling me during the appointment VERY upset. She was crying and refusing to go the horse farm with my mom. I think it was good for the Dr to hear her. She eventually calmed down and went.

Keeping my fingers crossed that we get this diagnosed soon and get things under control.

That is not true about the social thing. Kids on the spectrum can be very social especially with adults or older/younger kids. Not necessarily the child's age peers. My child is very much on the spectrum and is very attention seeking social. It is his own age group that baffles and frustrates him.

 

[SueM in MN]

My oldest niece is the director of an autism program. I was talking to her about the show, Parenthood, where one of the characters was diagnosed with Aspergers at about 11 or 12 years old.
She said it is actually is fairly common for children to be diagnosed with high functioning forms of autism that late in life. She said those children often have been diagnosed with some other 'alphabet soup' condition. Many of the high functioning kids can fit in socially in earlier childhood. Preadolescents start to have a more complex social system that becomes too difficult to cope with and it becomes more obvious that something else is going on.

 

[clanmcculloch]

Statements that suggest that kids who are social can't be on the spectrum is a hallmark of somebody who does not understand high functioning autism. The social portion of the diagnosis is NOT "not social" but rather difficulty with social language or inappropriate social behaviour. My 13yo Aspie is extremely social. She has a lot of difficulty with pragmatic (social) language including body language, facial expressions, recognizing things like sarcasm and idioms, etc and doesn't understand social conventions involving give and take in conversations and recognizing when people are trying to end conversations, etc.

My 13yo was diagnosed with Asperger Syndrome at 7. She presents far more like boys than girls so hers was much easier to recognize (though she did go through the alphabet soup of misdiagnosis from the time she was 3). My 11yo is in the process of being evaluated right now. It's looking like she's bordering in an AS diagnosis with an additional processing disorder which I guess is in a way tied to AS type of concrete thinking (I need to understand it more; I meet with the neurologist next week to discuss it). Everything I've read says that it's quite common for higher functioning kids to be diagnosed later.

Girls are usually much harder to diagnose because the literature and diagnostic criteria are all written for the typical presentation seen in boys. Girls typically present differently and tend to internalize much more than boys.

 

[MrRomance]

Firstly, I would like to say, I completely understand how you feel. Both of our daughters who we adopted 4 and a half years ago have ASD and it's been a nightmare for us to get them diagnosed with anything because everyone has always assumed that "they have emotional problems because they had a rough early life".

Your DD sounds like a complex mix of my two girls (DD11, DD7). The eldest was diagnosed with Classic Autism, Moderate Mental Retardation, Severe Expressive & Receptive Language Disorder, 5 Chromosomal abnormalities, serious psychosocial disorder and anxiety disorder just last year. It took 3 years to get her fully assessed and diagnosed.

Our little one has Aspergers Syndrome, she is extremely bright, very social and ahead of her peers by a LONG way, but she struggles dealing with people. When we first adopted her we were told she had attachment disorder because she is very cold and distant. We've since found out that was rubbish and she has AS and severe anxiety disorder. Her anxiety is so severe that she is physically sick.

Both girls are social in different ways, our eldest loves being around people, the little one likes other kids but not so good with adults. The social aspects are very different in girls than they are in boys and people assume that ASD are all anti social but that's just not true. My eldest is highly socially motivated but she can't manage and maintain relationships with others.

Hang on in there and keep bugging them to get specialist input. Your DD only has you to fight for her and be her advocate. It's a long hard fight but you will get there.
I don't know where you are in the world, but we pushed until we got the girls referred to Great Ormond Street Children's Hospital (UK) and they did a full assessment.

 

[Mickeyhead12]

That is not true about the social thing. Kids on the spectrum can be very social especially with adults or older/younger kids. Not necessarily the child's age peers. My child is very much on the spectrum and is very attention seeking social. It is his own age group that baffles and frustrates him.

My oldest niece is the director of an autism program. I was talking to her about the show, Parenthood, where one of the characters was diagnosed with Aspergers at about 11 or 12 years old.
She said it is actually is fairly common for children to be diagnosed with high functioning forms of autism that late in life. She said those children often have been diagnosed with some other 'alphabet soup' condition. Many of the high functioning kids can fit in socially in earlier childhood. Preadolescents start to have a more complex social system that becomes too difficult to cope with and it becomes more obvious that something else is going on.

Statements that suggest that kids who are social can't be on the spectrum is a hallmark of somebody who does not understand high functioning autism. The social portion of the diagnosis is NOT "not social" but rather difficulty with social language or inappropriate social behaviour. My 13yo Aspie is extremely social. She has a lot of difficulty with pragmatic (social) language including body language, facial expressions, recognizing things like sarcasm and idioms, etc and doesn't understand social conventions involving give and take in conversations and recognizing when people are trying to end conversations, etc.

My 13yo was diagnosed with Asperger Syndrome at 7. She presents far more like boys than girls so hers was much easier to recognize (though she did go through the alphabet soup of misdiagnosis from the time she was 3). My 11yo is in the process of being evaluated right now. It's looking like she's bordering in an AS diagnosis with an additional processing disorder which I guess is in a way tied to AS type of concrete thinking (I need to understand it more; I meet with the neurologist next week to discuss it). Everything I've read says that it's quite common for higher functioning kids to be diagnosed later.

Girls are usually much harder to diagnose because the literature and diagnostic criteria are all written for the typical presentation seen in boys. Girls typically present differently and tend to internalize much more than boys.

DD has always made friends very quickly- at Disney she always has someone to play with in the pool etc. But... she has problems keeping them because she is kind of rigid about how she plays. If they're playing a game and someone changes the rules she gets upset and says they're ruining the game. Now that she's in 7th grade she's really having a hard time. She says the kids think she's "a freak" which breaks my heart. She also really enjoys younger children and adults. Although she is not confident about reading facial expressions and often thinks someone is angry at her when they're not.

Firstly, I would like to say, I completely understand how you feel. Both of our daughters who we adopted 4 and a half years ago have ASD and it's been a nightmare for us to get them diagnosed with anything because everyone has always assumed that "they have emotional problems because they had a rough early life".

Your DD sounds like a complex mix of my two girls (DD11, DD7). The eldest was diagnosed with Classic Autism, Moderate Mental Retardation, Severe Expressive & Receptive Language Disorder, 5 Chromosomal abnormalities, serious psychosocial disorder and anxiety disorder just last year. It took 3 years to get her fully assessed and diagnosed.

Our little one has Aspergers Syndrome, she is extremely bright, very social and ahead of her peers by a LONG way, but she struggles dealing with people. When we first adopted her we were told she had attachment disorder because she is very cold and distant. We've since found out that was rubbish and she has AS and severe anxiety disorder. Her anxiety is so severe that she is physically sick.

Both girls are social in different ways, our eldest loves being around people, the little one likes other kids but not so good with adults. The social aspects are very different in girls than they are in boys and people assume that ASD are all anti social but that's just not true. My eldest is highly socially motivated but she can't manage and maintain relationships with others.

Hang on in there and keep bugging them to get specialist input. Your DD only has you to fight for her and be her advocate. It's a long hard fight but you will get there.
I don't know where you are in the world, but we pushed until we got the girls referred to Great Ormond Street Children's Hospital (UK) and they did a full assessment.

Thanks. We just got her into Yale Child Study clinic which should be very helpful. She was originally diagnosed with anxiety and symptoms of PTSD because of a tragic loss in our family. Diagnoses have been added since then so definitely an "alphabet soup" list. Hopefully we can get to the root of things now and get a plan in place to help. This whole process is very hard on our entire family. We're in survival mode right now.

Thanks everyone!!

 

[bookwormde]

WOW great that you got her into Yale child study!!

 

[Mickeyhead12]

Bookwormde- The clinical psychologist doing Dd's eval was an assistant prof or something there for 30 years so she called the director and left a message. When called they got us in quickly with a fellow who is a board certified adult psychiatrist doing her fellowship in child psychiatry. She's supervised by a child psychiatrist who has been there forever. Hopefully we can figure this out soon.

 

[bookwormde]

Yale is one of the top ASD research facilities on the country (along with Kennedy Kreiger).

If thery use the same diagnostic standards and proceedures that they used in the Korea study you should get a clear picture very quickly.

bookwormde

 

[Mickeyhead12]

What is the Korea study? Guess I should google it and find info. Right now we have an appt with the psychiatrist. We said we want to find the right diagnosis (is she on the spectrum?) and assess meds- which at this Point she definitely needs. I'm not sure DD is going to cooperate and talk to her because she is so anxious and frustrated w adults not being able to help her. I dont know how we can get the scale done. She wouldn't even talk to the psychologist and says she doesn't like her she's mean. Any advice?

That should say eval not scale- stupid predicitive typing on my phone.

 

[jodifla]

The Korea study? That's been pretty widely questioned/discredited.

 

[jodifla]

Here's an article on the Korea study:

http://www.medpagetoday.com/Pediatrics/Autism/26386


!
High Rate of Autism in Korea Pegged to Methods

The authors acknowledged other limitations of their study, including funding from Autism Speaks, the autism advocacy organization. Also, the survey had an overall low response rate (63%) and parents of children with ASDs may have accounted for a greater proportion of the study population. Parents whose children did not have ASDs and were not in need of healthcare services may have been less inclined to respond.

Indeed, Kim and colleagues note that it's "possible that our calculations overestimate prevalence as a result of a less-than-optimal participation rate in our general population sample."

"It could be argued that in this cultural context, with few services for children with developmental disorders, parents of children with serious but unrecognized developmental problems would be more likely to participate in research than parents of unaffected children," they said.

 

[jodifla]

I've belonged to the boards for years but I'm posting under a new name because sometimes people aren't very nice on the other boards and stalk posts to find out about people.

My daughter is 12 and was diagnosed with generalized anxiety disorder when she was 8. They added panic disorder when she was 10. Now she's 12, in 7th grade and having a very difficult time. She's taken zoloft for years but it's no longer working. We can't increase the dose because it causes agitation. We're waiting to have a psychological eval done and are meeting with a new psychiatrist this coming week to explore new medications and possibly a new diagnosis. The psychologist doing the eval observed her in school last spring, has rating scales completed by us and the school, and met her over the summer when we tried to get the eval done but DD was too anxious. She said at a recent PPT that her "working diagnosis" is somewhere on the spectrum on top of the anxiety. I forgot to mention that she was also diagnosed with SPD in 4th grade.

This diagnosis makes sense in some ways but I'm wondering if anyone else has a child who was diagnosed at this age (or older). She is a very social girl who makes friends easily but has difficulty keeping them sometimes. She has black and white thinking and when she gets mad at someone she stays mad.

I wish we could get a diagnosis and make a plan quickly but it just doesn't work that way. She was having such difficulty getting into school (meltdowns in the car etc) that she's on homebound until we get this all under control.

Thanks for listening!

A few notes: Autism (or ASD) is the go-to Dx for everything these days. So really research it, and make sure it's the right fit. Get the absolute best to work with, because these Dxes are only as good as the people making them.

While the right label is empowering and can put you on the right path to help, the wrong label can send you off totally in the wrong direction. In some cases, clinicians are so quick to consider everything autism that they miss what's really going on.

Edited to add: I see you got in with the Yale group. A big name to be sure, but I suggest you do your homework on them as well, and on the individual you'll be working with.