Late in the game AS diagnosis??

[tinkslite]

Some of you already know that my daughter was recently diagnosed with Aspergers by a psychiatrist. He has referred us to a local psychologist, for her PTSD and other side issues (we adopted her after her first three and half years were peppered with severe abuse and neglect).
She is now 14 years old.
WE have had several, "odd, that doesnt seem/sound right" diagnoses over the years. General Anxiety Disorder. Obsessive Compulsive (she has some tendencies toward this), Fetal Alcohol Syndrome (likely), PTSD, RAD......Low IQ.......
Her memory for details is phenomenal....Particularly visual details. She spent 10 minutes telling me how a car I pointed to couldn't possibly be a Corvette due to these details............... this afternoon. She is currently fascinated by corvettes. All makes and models.....She does say the bright yellow ones are "stupid looking." I think they offend her senses. Too bright.
Anyway, I finally reached the psychologist the diagnosing dr. had referred me to, in glowing terms-just this afternoon. When I explained that Dr. S had referred us to her after diagnosing Jessi with Aspergers, PTSD, and probably FAS; she said "Aspergers? And she is JUST diagnosed now?"
I felt I was being judged somehow. It really sounded derisive. I went ahead and made the appt. BUT I am feeling defensive now.
Any thoughts????
I need reassurance, I think. It isn't as though we hadn't tried to seek help in the past......

 

[clanmcculloch]

It is VERY common for kids, girls more than boys, to end up with later diagnosis. This is especially true of kids with other concurrent conditions (like the PTSD and FAS) because some symptoms are common among multiple disorders and could have been attributed to these conditions and therefore ignored in further diagnosis. Add to that the fact that you didn't have her since birth and you've got a child who is lucky to even be getting diagnosed now at 14. YOU'VE DONE EVERYTHING YOU COULD HAVE DONE and in fact have done so much more than many would have done considering the fact that she was originally your foster child who you then adopted. OMG I can not say this loudly enough. YOU NOT ONLY DID NOTHING WRONG BUT IN FACT HAVE DONE SO MUCH RIGHT FOR THIS WONDERFUL GIRL!! Keep repeating this to yourself.

When you were making the appointment, I'm guessing that the person you were speaking with knew nothing of her history and how long you've been trying to find answers. The fact that it's taken this long is not a reflection on you, it's a reflection on the professionals and an imperfect system. As hard as it is, please try to not take it personally. {{{{HUGS}}}}

FYI - the car thing is the exact type of thing that my daughter would do though not with cars. My daughter can tell you every little detail of what minute differences in the way Manga pictures and Anime movies (I've been endlessly educated on the difference between manga and anime; sigh) are drawn can mean including how the American vs Japanese will differ. It's amazing just how much every little nuance of those pictures portrays some kind of meaning. I think her favourite part of WDW is the Japanese pavillion and she always makes sure she's got money for buying drawing books there. Your daughter I'm guessing loves the area at the end of Test Track.

 

[Libbyt]

Tinkslite, has your daughter had any genetic testing recently? We went through so many years of our dd being diagnosed with this, that, and the other, never with anything that really made a lot of sense. Had all kinds of testing done over the years, including genetic testing when she was 3. Finally, at age 18, we had the genetic stuff re-done (trying to find the answer to why she was frequently passing out) and lo and behold she was diagnosed with a very rare genetic metabolic disorder. FINALLY something that ties all the pieces of her together! It was like all those other diagnoses were just naming the symptoms and the genetic disorder put a name on the whole thing. There ARE kids out there who science just hasn't caught up with yet, and your dd is probably one of them. If she hasn't had genetic testing recently, I would recommend it - you may find some answers or at least some more clues.

 

[cnktruitt]

After years of doctor appts my son was also diagnosed with Aspergers. And it was a very rough, bumpy road... And I have beaten myself up many times over for not having a good diagnosis for my now 17 yr old son. He too was labeled everything from OCD, ADHD, Severely Emotionally Disturbed and paranoid schizophrnia. My younger son by contrast was given a tentative diagnosis at 4; he is now 8. My 8 yr old is getting lots of help from the school system and doors just open for him. He is a much happier & better adjusted child.

The big thing that pops into my head is that research over ASD has just boomed in the past 5 years. It is not your fault she wasn't diag earlier! Don't be like me and sleep with a guilty conscience. (yes, I know, not my fault either) If only........if only my older son had been born later, his clues would have been picked up earlier. If only. Not a big fan of "if only".

Finally, at age 18, we had the genetic stuff re-done (trying to find the answer to why she was frequently passing out) and lo and behold she was diagnosed with a very rare genetic metabolic disorder.

Libby, I was hoping you could tell me more about your daughters disorder. My older son had been passing out a lot over the past 6 months. He has seen neurologists and had sleep studies done. No one seems overly concerned except his family. The next step is a cardiologist.

 

[tinkslite]

Yes, she is very detail saavy re. Corvettes. We live in the Reno/Tahoe area and the Hot August Nights car show is in town this week. I am trying to find time to take her downtown to peruse some of the older model vettes. Not something I would normally be into, but she is so enthusiastic about it! She has recently taken up Pop Warner Cheerleading. These 1st two weeks of practice are known as HEll WEek amongst the coaches and kids. Jessi being....well, ..... less than graceful, means that it is that much harder for her. And of course, it's a new social setting too. So at every water break when the girls are talking and giggling- Jessi is sitting or standing on the edges watching and listening. sigh.

It is VERY common for kids, girls more than boys, to end up with later diagnosis. I had no idea that was true.This is especially true of kids with other concurrent conditions (like the PTSD and FAS) because some symptoms are common among multiple disorders and could have been attributed to these conditions and therefore ignored in further diagnosis. Add to that the fact that you didn't have her since birth and you've got a child who is lucky to even be getting diagnosed now at 14. YOU'VE DONE EVERYTHING YOU COULD HAVE DONE and in fact have done so much more than many would have done considering the fact that she was originally your foster child who you then adopted. OMG I can not say this loudly enough. YOU NOT ONLY DID NOTHING WRONG BUT IN FACT HAVE DONE SO MUCH RIGHT FOR THIS WONDERFUL GIRL!! Keep repeating this to yourself.

Thanks. This is so hard. We have been through this sort of "treat the symptoms then figure out what is actually wrong years later" with her medically special needs brother, too.

When you were making the appointment, I'm guessing that the person you were speaking with knew nothing of her history and how long you've been trying to find answers. The fact that it's taken this long is not a reflection on you, it's a reflection on the professionals and an imperfect system. As hard as it is, please try to not take it personally. {{{{HUGS}}}}

FYI - the car thing is the exact type of thing that my daughter would do though not with cars. My daughter can tell you every little detail of what minute differences in the way Manga pictures and Anime movies (I've been endlessly educated on the difference between manga and anime; sigh) are drawn can mean including how the American vs Japanese will differ. It's amazing just how much every little nuance of those pictures portrays some kind of meaning. I think her favourite part of WDW is the Japanese pavillion and she always makes sure she's got money for buying drawing books there. Your daughter I'm guessing loves the area at the end of Test Track.

LOL. Well, the corvette thing is just in the past few months. It is actually a step toward "normal." She used to obsessively collect. The collections were (at different times): pine cones, clothing tags (like off of new clothes, I couldn't take her into walmart for a little while cause she would pull them off!), rocks(not pretty polished ones,just rocks), those travel pamphlets you get in hotel lobbies (that was hideous, we live in a travel center!!). So the interest in car detail and focusing on one model is an improvement (she doesn't have a pile of trash in her room, she isn't pulling tags off of things in the stores, and she isn't filling her closet with rocks or pine cones!
As for Test Track. I will be very interested to see if that becomes a favorite attraction when we visit next month (9/5-9/10)

 

[a1tinkfans]

OP: don't let comments (or in this case ignorance of your personal situation) offend you. See the doctor and then make a judgement if it is someone that can help your child.

I do not often frequent the Disability threads but today I saw the "Aspergers" thread and responded and had to pop in here too, to say how in AWE I am of all the wonderful moms and dads and caregivers of these very lucky children. I just don't think that there are enough people saying/knowing what dedication it takes to raise any child with any issue.
So, from me to you, BLESS you all and Best of Luck in the Success of raising Amazing kids!
SUPERMOMS do exist,

 

[Libbyt]

CNKTRUITT, the diagnosis was 3methylglutaconic aciduria (3MGA), which is a rare metabolic disorder. The issues that she (we) have dealt with most of her life are speech disorder, vision problems (abnormal optic nerves), fine & gross motor impairment/low muscle tone, cognitive delays, some psychological issues (extreme anxiety).......things that don't usually all fit into one diagnosis package. She started the passing out a couple of years ago and it progressed til it was happening almost daily earlier this year; we had started investigating that seriously last year, got the metabolic diagnosis, also saw a cardiologist for a full workup. He started her on some meds (florinef and zoloft), which didn't seem to have much impact. Had a full electrophysiology workup at Duke a few weeks ago and found that her blood pressure fluctuates constantly. Dr. is saying at the moment that it's basically just vasovagal syncope (regular, run-of-the-mill fainting) that is probably exacerbated by her metabolic disorder and her anxiety. We're visiting the metabolic doc next week to see where he wants to go next with it. Meds that the cardiologist might use for the syncope can be problematic for her metabolism, so not quite sure what's next.

I would say your seeing a cardiologist is a great next step; if the problem continues, ask to be referred to an electrophysiologist for a tilt table test (more intense than the tilt table test that cardiologists do.) Please let me know if you'd like more info. Also, check out the website oaanews dot org - lots of metabolic disorder info there. We've had so much trouble finding info ourselves, if I can help someone else in their journey, I'm happy to do so!!

Sorry to hijack the thread for a moment!!

 

[Earstou]

My ds was diagnosed at 13. He is also adhd, gifted, and has a learning disability. This doctor was surprised that he hadn't been diagnosed earlier. I suspected he had Aspergers for a long time. But I kept being told by different doctors it was only the ADHD.

His interest has always been vehicles, like garbage trucks, recycling trucks, tractors, ect. Thankfully it has evolved into just cars. I'm happy it's a normal teen boy topic!!! Can you imagine a teen talking about garbage trucks at school!

We just got back from a UK trip and he loved seeing all the different cars over there.

 

[cnktruitt]

Hey Libby, Thanks for the quick reply.

The second I announced you had replied my husband began reading over my shoulder......we will definately be looking into this further. There are many similarities in fact everything you mentioned except for abnormal optic nerves. He does have poor eyesight however. He began passing out frequently before summer began and has high fluctuating blood pressure. Our family doctor originally thought he might be having seizures but that has since been ruled out. I find it odd that the neurologist wasn't more concerned.

Anyway........Yes, I would love whatever information you may have. I cannot tell you how stressful this whole situation has been on the entire family. Thank You for Listening!

Sorry, sorry for hijacking the thread

 

[Libbyt]

CNKTRUITT, please email me directly at libbyt@catawbacountync.gov and I'll be glad to share more details with you!

Libby

 

[bookwormde]

I am sure this was not directed towards you, bur rather towards the myriad of clinicians and educators who are in her file who lacked even the minimal competency to properly identify your child’s needs. In a sense I can understand when they do not purport to have any specialty in child development but those who do and are incompetent when it comes to Aspergers it is morally reprehensible.

It is actually a very good sign that the clinician shows distain for the other clinicians and educators incompetence, as this is often a sign that the clinician really “gets it” and understands the unnecessary damage and missed opportunities that these uniformed clinicians cause.

One thing also to remember is that the state of the science is advancing rapidly so much of what it available today to help you daughter was not available 5 years ago, actually 5 years ago it was very rare to have a female diagnosed as Aspergers since the diagnostic standard was designed around male characteristics and manifestations which are often significantly different from females.

bookwormde

 

[OneLittleSpark]

I've not read all the replies, so sorry if I repeat anyone!

Many people are diagnosed with autistic-spectrum conditions later in life. I have a friend who wasn't diagnosed with conditions in the autistic 'family' until he was at university! Because there is no simple test for conditions like this, they are much harder to diagnose, and frequently get 'overlooked'. Also, it may have been harder to diagnose in your daughter, as she also has a number of other challenges and disabilities.

As for the doctor's tone, there is no excuse for that whatsoever! From what I know of you from your posts about your DD, you are an amazing mother, who is doing everything she can to look after such a special kid! Could it be that the doctor's tone was actually aimed at the other doctors your DD has seen, rather than you? Hopefully it was just a miscommunication, and he didn't make himself clear enough. If, however, he was judging you, then he's an idiot and doesn't deserve any more of your precious time, worrying about what he meant!

Not getting your child instantly diagnosed with an invisible disability doesn't make you a bad parent. In fact, it makes you a good parent, because you persisted to try and get the correct diagnosis.

 

[tinkslite]

One or two folks have mentioned that they suspected aspergers, in their child, prior to diagnosis. I had read a little bit about it, and wondered. But there were enough "off" symptoms, stemming from other issues (she will never be called a "little professor" or "genius" her iq is quite low, due to fas). That is contraindicated for an aspergers diagnosis.
Just about every other symptom IS present, in one form or another.
It IS frustrating that she is only now diagnosed. BUT, I am at the "where do I do from here, " point and do not wish to feel any, "what did I do wrong, how have I failed my child."
In any case, her appt. is next week, she is really enjoying cheerleading, we've had NO major meltdowns all week so we are having an ok week!

 

[Libbyt]

Do you guys have any special needs cheerleading teams in your area? My dd is on one and it has been one of the best experiences of our lives! All the kids have different disabilities, go to different schools, mix of ages and diagnoses.......they are just a great group. It gives them a peer group that they don't have anywhere else, they go to movies, talk on the phone, spend the night together. It's been wonderful for us as parents - just to have someone else to lean on and learn from - if our own kid is having a tantrum or something, another mom just steps in.......with some of our girls, we have to switch daughters to get their hair and make up ready for competitions! I know you mentioned your dd doing Pop Warner and my heart broke when I read about her feeling not a part of the group. Special needs competitive cheerleading is a huge fad on the East coast - it's springing up everywhere - and getting a great response from the cheer community. Check it out if you have a team near you!

Not sure if this will work, but here's a link to a tv piece about our team.......my dd is the one where the reporter is trying on her glasses!

http://www.wcnc.com/video/index.html?nvid=339155

 

[tinkslite]

I have not found anything specific for special needs (though it would certainly be a boon).
The last 2 nights the coach has done some fun "team building" types of games with the girls, and Jessi was able to participate. By the end she was mingling a little bit more.......So I am hopeful that things are improving. One of the other girls has a sister with Downs, and she has been particularly supportive of Jessi.
I will certainly keep my eye out for the type of cheer program you mentioned, but so far I havent seen anything like it in the reno/tahoe area.

 

[BabyEars]

I so understand how you are feeling. My son was diagnosed with ADHD in kindergarten. I also have ADHD as does my father and my deceased grandmother. So needless to say I suspected when I was pregnant he had ADHD and by 2 years I was convinced. No suprise when he was diagnosed. However, we struggled for years with obsessive behaviors, above average intelligence with very bad social skills, meltdowns, ect... I KNEW that this was not typical behavior for a child with ADHD. I literally took him to one Dr after another and even to Vanderbilt Childrens Hospital, (A world known hospital). NO one could give me an answer. I had a Sunday School teacher tell me he had a spirit of rebellion, his 1st grade teacher tell me he would be in prison one day, other parents asked me if I ever disciplined him, elderly women would tell me I needed to bust his butt after witnessing a meltdown, and so on and so on...... The most upsetting time came in 2nd grade. He is my oldest so I really didn't have a comparisson for social skills. I joined him in class for a party. I was shocked at the difference between my son and the other 2nd graders. He was so far behind in social skills and so immature for his age. I came home and cried like I never have and I don't cry very easily. I was so upset that I mentioned it to my Mother in Law who then mentioned it to her Therapist because she was so upset. Her Therapist asked a few questions and told my Mother in Law that she was positive he had Asperger's. She had never heard of this before. When she got home she searched the internet and called me within the hour. I got on-line and it was like reading first hand accounts of my Son and his behaviors. I was shocked and thrilled at the same time that I wasn't crazy....that there was something going on.....and that this was not because I was a bad mom. Since then life has improved dramatically in our home and with my son. We have read every piece of literatute we can find, have involved an educational advocate for my son, and have learned how to teach him the social skills he needs so much.

Do not beat yourself up. If "experts" could not diagnose my son then those of us who have never even heard of Asperger's cannot be expected too. It is not because you are a bad mother!!!! In fact, they are pretty sure that this is a gentic disorder that has nothing to do with environment.

I am so happy that this disorder is starting to get more nation attention by having it on shows such as House and Boston Legal. My son felt really cool when House was diagnosed with Asperger's.

 

[Libbyt]

Tinkslite, if there are cheerleading gyms in your area, give them a call and ask if they are interested in starting a special needs team. Like I said, it's a huge trend right now, and our gym was very excited to give us a home (we had started independently and our team fell apart when our coach went off to college). If you know if several kids who may be interested, it would not be difficult at all to get it going, with an established gym as a host! The rules with the competition hosting organizations are not stringent at all, for example, you are not required to be an official Special Olympics group, which has pretty rigid requirements.

 

[sjanus]

Hi Tinkslite,

Working in the field of school psychology/behavior analysis/and autism for 15 years before my recent retirement, I don't find it unusual at all that children with Asperger's Disorder are often labelled under other disorders, such as ADHD, Anxiety Disorder, Obsessive Compulsive Disorder, Emotionally Disturbed, just to mention a few. Often clinicians evaluate students early on in the game, and based on behavioral interviews with parents, teachers, and other caregivers, rather than a full comprehensive evaluation with professionals of different expertise, i.e., psychiatrists, psychologists, behavior analysts, medical doctor, genetic testing, etc. All of this is very important.

It is not unusual at all for the diagnosis to be missed for Asperger Disorder until middle school/high school. This is when it often comes to the forefront whenever all the social situations emerge where these individuals have the most difficulty. Most parents are relieved when they find out that the behavioral symptoms match a disorder they finally can gain research and begin appropriate interventions. It is not too late. It sounds like you have been a great parent, always searching for answers, and I'm sure looking for the best interventions given the information provided.

A full comprehensive evaluation would seem to be in order now. The genetic testing is a great idea, and a full psychoeducational evaluation with input from a Board Certified Behavior Analyst for programming ideas is what I would do myself if this were my child or grandchild. You definitely are on the right track.

Often time children have comorbid diagnoses, and this is the most difficult for clinicians then to pinpoint what the primary difficulties are and how to proceed with treatment. It is most difficult for parents searching for answers to provide the very best treatment for their children.

A Team approach is the best! Getting the school involved, the school psychologist, sharing results between clinicians and shool personnel is definitely the best way to proceed.

Sorry just answering now, but this is the first time I've realized there was this section on the Dis Boards.

Let us all know how things go after the appointment, and never let anyone make you feel bad for being the best advocate for your child.

Whether the diagnosis is Asperger Disorder, Pervasive Developmental Disorder, NOS, high functioning autism, etc., it is a large umbrella and not so unusual for children to be missed, especially when there are co-morbid diagnoses as in your case. Having the Autism Spectrum Disorder diagnosis in any of the above categories should open up a whole array of services in your community and n the schools.

Take one day at a time....the prognosis is good....especially with all of the support you and your husband have provided already.

Sandy

 

[tinkslite]

I am getting used to some new terminology. "co morbid?"
I don't see how genetic tests can be done on my adopted daughter?

At this point the team is Me and her father (not to mention her brothers), the psychiatrist who diagnosed her (and will see her once per mo), the psychologist who made the remark that sent me reeling (but I still have the appt), the occupational therapy center I was referred to, her school teacher (special ed. BUT remember: this is an ONLINE school....I am the staff person she sees every day. Her teacher is a bit more distant. Although there are opportunities for face to face learning they are less often at this school.)

Should there be others on this team?

Also, as far as creating a cheerleading team from "kids we know". WE don't! I am trying to find a supportive community of "been there done that's" but have not so far....Except here.
I've read a ton of books (Tony Attwood etc.) and surfed the web....

 

[sjanus]

Hi Tinkslite,

They can test for certain genetic disorders that may parallel autism, by the characteristics of the genes that contribute to that disorder, if that makes any sense. I have a cousin for instance that has two sons, 4 and 6, with Fragile X, symptoms of which parallel Autism. They also had the diagnosis of PDD, NOS (Pervasive Developmental Disorder, Not Otherwise Specified) before the testing (which they are still maintaining even though the Fragile X is the predominant disorder--the characteristics most match the PDD (Autism Umbrella if you don't fit all the criteria of Autism but some of the symptoms).

Once Tracy had the testing done, she was also tested and found out she also has milder case of Fragile X, which makes her understand some of her learning problems when she was a child. Their test was independent of her testing (after the fact) to try to reveal who the genes came from (but less of a concern in your case). After the testing, and she found out that both boys have Fragile X, she was able to research it, find strategies that work, etc., and a lot of the developmental disabilities both boys have made so much sense to her. It still is a very difficult road but the 6 year old is starting school and was able to get services under the Autism category. The IEP strategies she worked out with the team focus on a lot of the same type that work with Autism, although contributing to the symptoms, is the Fragile X. She also works with specialists from Children Hospital in the field specializing in Fragile X who made some wonderful recommendations to the school. The 4 year old receives develoopmental services through an early intervention program. As a specialist in the field of School Psychology/Behavior/Autism, I've been advocating for her and her son that is now school age. She struggled for 3 years with different diagnoses for the older son, until someone at Children's Hospital here in Pittsburgh recommended the genetic testing. Then, at least, she now knows what she is dealing with!

That is just an example of where genetic testing paid off! Sometimes it is just to rule out other factors that could be contributing to the symptoms.

It seems like you have a great team, the only other person I would recommend is someone with a behavioral analysis/autism background, services of which may be available if you have the diagnosis, through your local mental health center. They could be a great support to you and in helping with the social behaviors. I'm not sure from state to state what services are available; in our area (Pennsylvania) we have Behavioral Suppport Consultants and Therapeutic Staff Support Persons (BSC and TSS). Just an idea if you think you could use that type of support. The Behavioral Support Consultant would write a social/behavior program and supervise the Therapeutic Staff Support Person that works with the student and the family on a regular basis. The Behavioral Support Consultant would also be involved in monitoring the program with the family and the student.

Co-Morbid just means you have more than one diagnosis, two things going on at the same time, for instance you can have Asperger Disorder and an Anxiety Disorder; often time in adolescence it is common for those with Asperger's Disorder to have Depression (they want friends and have difficulty with that reciprocal type of interaction, engaging in conversation, or get caught up in their own restricted interest, etc., needed for social relationships).

Please don't feel stupid--this is the first time you are hearing this and others have been involved for a while. In my case, it has been my profession...sorry for the terminology. Just trying to help...I love the field and these children who are so special--each one with their own unique characteristics and personalities. The best resource your daughter has, of course, is you!

Sandy