xpost: autism....aspergers in girls...about dd

[Holly IN]

Hello,

 

My daughter was officially diagnosed as Autistic when she was 5 yrs old. She was diagnosed with PDD-NOS when she was 2 1/2 yrs old. Several other therapist didn't agree with psych's diagnoses of this but said she is autistic not pdd-nos. We had her evaluated at 5 and behavioral pedicatrican that specialized in bipolar, add/adhd, autism and aspergers.

 

He told us she is autistic moderatly but as she gets older could end up being aspergers or mild autism. She is looking to be much more aspergers according to Tony Atwood's criteria for girls on spectrum.

 

I feel at this point that it is a moot point to get her re-evaluated again for this as treatments are the same. Plus she doesn't want to go back to therapy. She hates it and rather us do the stuff at home.

 

Does it really matter if we get her re-evaluated or not?

 

She does struggle with school but is very gifted in the arts (singing and drawing esp with computers). She is very very smart but not on paper with school. We homeschool her along with her brothers who are normal....even though one of them asked me if he has aspergers. I told him if he did it is so mild but do not see a diagnoses happening as he doesn't have all the required charisterics for diagnoses. He agreed but feels that he struggles with certain things. Autism is hereditary in our family so I do see this.

 

Anyway tell me your thoughts. Just need to bounce around with you guys and chat.

 

Holly

[Dandelion]

 

Does it really matter if we get her re-evaluated or not?

 

 

 

My 9 year old DS is diagnosed with Asperger's. IMO, an autism spectrum diagnosis is generally only helpful if you plan to seek services or accommodations for your child. If the therapies/services that you feel would be beneficial for your child are available to you without a diagnosis/re-evalulation, or if insurance wouldn't cover them anyway, then a re-evaluation is probably not necessary. As your DD gets older, a re-evaluation might be helpful if she plans to attend college. Certain accommodations (more time on tests, etc.) can be made available to her on the basis of her diagnosis.

 

We briefly pursued OT for DS, and we're now looking into a social skills group. Because he has a diagnosis, insurance will pay for these things. Beyond that, his diagnosis doesn't change what we do on a day-to-day basis.

 

So, if you're not planning on pursuing additional therapies or accommodations at this time, you can probably postpone the re-evaluation. You can always have her re-evaluated at a later date if you think accommodations will be necessary as she prepares for college.

[wapiti]

I would be loosely planning a re-evaluation schedule, looking ahead to SATs, etc., in case she would be eligible for accommodations. (This would probably be a neuropsych or psych eval that included IQ testing.) Plus, there may be specific aspects of test results that might assist in curriculum choice and teaching (e.g., processing speed, etc.).

ETA, "very very smart but not on paper with school" absolutely cries out 2e (twice-exceptional), i.e., there may be some other LD to be aware of, and that is a reason all by itself for a neuropsych evaluation.

Edited September 15, 2016 by wapiti

[thebacabunch]

How old is your dd? I would keep up with her diagnosis. She will benefit from therapy whether she wants to do it or not. My dd8 is autistic, very high functioning, and might have been considered aspergers, but that diagnosis is not being used so much now. She NEEDS the help to do other things besides the things she likes. She has improved so much. This is just my opinion and take it as such, but I think not getting services for someone with autism is child abuse.

[Orthodox6]

I have speculated that PDD-NOS is assigned when the child is too young for anything more specific to be a firmer diagnosis. I'm far more uncomfortable with the new DSM placing Asperger's under the autism label. (I do not consider myself autistic one bit!)

 

Formal diagnosis can be helpful down the road, if your dd does better in test situations with accommodations. One Asperger's student whom we know well was allowed unlimited time to take his SAT exam for college. One of my sons (with ADHD) was told that, in order to have accommodations for college tests, he would have to have his testing results (for diagnostic purposes) no older than one year prior to his entering college. As he had been diagnosed years earlier, we could not afford to retest all over again. Fortunately, he got through college with high grades anyway.

[Holly IN]

How old is your dd? I would keep up with her diagnosis. She will benefit from therapy whether she wants to do it or not. My dd8 is autistic, very high functioning, and might have been considered aspergers, but that diagnosis is not being used so much now. She NEEDS the help to do other things besides the things she likes. She has improved so much. This is just my opinion and take it as such, but I think not getting services for someone with autism is child abuse.

 

WOW! I see you really think its child abuse???? We have been getting therapies....some have been actually harmful to my dd. Some have been very helpful. She does not want therapies. She wants us to continue to do what we have been doing with her. I am just a bit reeling from the slap your last sentence.

 

Holly

[Holly IN]

She is officially diagnosed as Autistic Disorder in the moderate range. Also with Severe anxiety disorder. She has been in thereapies when she was younger. We stopped it when therapist refused to move dd forward. We have spent so much money (yes insurance paid but not for all of it) in sending her for therapies. We are doing a lot of stuff at home with her (RDI stuff as we got a lot of stuff related to that before they closed it to the public).

 

She is 13 yrs old. Very bright girl. She can benefit from social groups but what they have here are not good from what others say. They said to work at home with script and go over it repeatedly with different scenerios (sp?).

 

We have to take into considerations her feeling on the therapies. She had very bad experiences with two therapist that I had to fire. Our beh. ped backed us up on stopping therapies for a while and work with her ourselves.

 

Neurologist als confirmed her autistic diagnoses but also said she can be updated to Aspergers when she gets older.

 

Hope this helps!!

 

Holly

[Orthodox6]

Holly, this is just some gentle brainstorming that crossed my mind. I was wondering whether your dd prefers just to implement some of the therapies at home is because she does not like the "stretch" required of her to interact with people outside of the family. The interventions which my ds with Asperger's received elsewhere helped him to feel at ease in most social situations where no family member is present. Helped him enormously I underscore. Before learning to interact easily with people when away from home, our son also resisted having to do anything elsewhere. (He now is in college, having a great time.) I guess I'm trying to express that therapies restricted to the home environment do not translate readily to the child feeling more secure with himself when away from home. Just a thought. . . .

 

P.S. Your most recent post came in as I was drafting the paragraph above. I empathize with you and the bad experiences with therapists. For sure that would make you gun-shy! (We foolishly remained for ten years with an incompetent psychiatrist who misdiagnosed two of our sons as bipolar and treated them accordingly.)

[scrapbookbuzz]

Aspergers and PDD-NOS ARE autism, they fall on the spectrum. As for evaluation, I think a previous poster had a good idea about re-evaluating as it gets closer to the test times for the ACT, SAT, etc.

One thing I do want to point out, for everyone's benefit, and I'm sure you didn't think about the wording, but let's remember that it's not about being autistic or being "normal", but it's about

being accepted for who we are. The more I follow Karla's ASD Page and ThAUTcast on Facebook (both written by autistic adults), the more I find myself thinking that it's not the autistic folk with the social

problems, it's us, the 'neurotypicals'. Autistic kids and adults function within the realm of the way their brains are wired. People with Aspergers were originally described as having poor social skills and

lacking empathy. That whole "lacking empathy" description is full of a million holes. Anyone who's been around someone with Aspergers for enough time will tell you these folks do have empathy, they do

care about people.They just show it differently. The social skills issue, I believe, is just the neurotypical's lack of understanding how the autistic brain works. The autistic folk I've been around are WAY more

accepting of quirky people than us neurotypicals. In regards to your question, OP, I think what autistic kids need the MOST is the love, nurturing, and accepting of their PARENTS more than any therapy.

Nothing wrong with the appropriate therapies if it's needed, but we should not view therapy as a panacea.

[Holly IN]

She is taking one class outside the home which is Art. Her anxiety kicks in high gear before the class. So we have to be careful at how far we push her as she does shut down and meltdown. We are slowly branching her out but only with classes where no grading are required. We did put her in a class where grades were involved and it was a bad deal all the way round where she recieved bad grades due to the teacher not giving her accomodations. You wouldn't believe how some homeschool teachers are. Very UNaccomodating than PS teachers. Much to my surprise. However our beh ped backs us up on homeschooling and highly encourage us to keep her home and only put her in classes where no grades are happening.

 

I know college will be a different ball game but I know they do accomodations. We will have to cross that bridge when we get there.

 

Thanks Orthodox6 for your brainstorm. Will have to discuss with hubby....

 

My main issue is updating diagnoses. Is it worth it or not??

 

Holly

[Parrothead]

How old is your dd? I would keep up with her diagnosis. She will benefit from therapy whether she wants to do it or not. My dd8 is autistic, very high functioning, and might have been considered aspergers, but that diagnosis is not being used so much now. She NEEDS the help to do other things besides the things she likes. She has improved so much. This is just my opinion and take it as such, but I think not getting services for someone with autism is child abuse.

Wow! Harsh much?

[Holly IN]

Thank you Scrapbookbuzz!! That is a huge relief for me to see what you wrote. Thank you for your words!!

 

My dd is very empathic but shows it in a very different way. NT people take it the wrong way sometime. She can't tolerate people looking at her. She finds it very offensive. So they do not understand it when she doesn't smile back. you can only look at her for a few seconds no more. We have talked to her about this. We told her she is very beautiful (literally beautiful) and people like looking at you. She doesn't like it. She purposefully tries to not look pretty by not fixing herself up. So it is a bit of a predictament. :)

 

Anyway thank you!!

 

Holly

[Parrothead]

She is taking one class outside the home which is Art. Her anxiety kicks in high gear before the class. So we have to be careful at how far we push her as she does shut down and meltdown. We are slowly branching her out but only with classes where no grading are required. We did put her in a class where grades were involved and it was a bad deal all the way round where she recieved bad grades due to the teacher not giving her accomodations. You wouldn't believe how some homeschool teachers are. Very UNaccomodating than PS teachers. Much to my surprise. However our beh ped backs us up on homeschooling and highly encourage us to keep her home and only put her in classes where no grades are happening.

 

I know college will be a different ball game but I know they do accomodations. We will have to cross that bridge when we get there.

 

Thanks Orthodox6 for your brainstorm. Will have to discuss with hubby....

 

My main issue is updating diagnoses. Is it worth it or not??

 

Holly

 

If it will allow her a better chance to score well on the SAT I'd go for the update closer to time for the test.

[Holly IN]

Wow! Harsh much?

 

"This is just my opinion and take it as such, but I think not getting services for someone with autism is child abuse."

 

This statement is what I didn't need to "hear". I understand it is her opinion but still a very hard slap in the face. I really didn't need that. The rest is fine but this statement. I wasn't expectiing that. It is not something I need right now.

 

Holly

[Parrothead]

 

 

"This is just my opinion and take it as such, but I think not getting services for someone with autism is child abuse."

 

This statement is what I didn't need to "hear". I understand it is her opinion but still a very hard slap in the face. I really didn't need that. The rest is fine but this statement. I wasn't expectiing that. It is not something I need right now.

 

Holly

 

I agree. I don't think any parent doing his/ her level best for their child needs to hear that opinion when looking for advice. It isn't like it will endear the poster to oneself to the point that one runs right out and engages services one doesn't feel ones child needs or are appropriate.

 

[Rebecca VA]

In an effort to help my 15-year-old (who has never been diagnosed with anything but who has displayed very mild autistic-like traits all her life), I read Temple Grandin's book The Way I See It last week. It gave some great information that I wish I'd known years earlier. Some of the tidbits that were especially important to me were: (1) Temple said it is extremely (massively) important to get the child exposed to the outside world, for hours a day if possible, so that he/she can feel comfortable there. I didn't do that as my daughter was growing up -- she got out a fair amount, but I didn't put her out there as much, and with as much deliberation, as I should have. We're trying to make up for lost time now, and I think boarding school is helping my daughter, but I wish I'd made socialization an issue all along. (2) Temple also advised -- using incidents from her adolescent days as examples -- having the child become proficient in whatever they're interested in, and then using those skills to become useful and sought-after in an organized group. I told my daughter about that advice, and she immediately saw the wisdom in it. She just needed someone to point it out to her. (3) Temple has taken anti-anxiety meds for over 30 years! Who knew? -- she seems so laid-back. She talks a lot about meds and other treatments in the book.

 

Please excuse my enthusiasm for a book that I'm sure you read years ago. I really, really like Temple Grandin and find her to be so sensible. She has written a social skills book as well that is next on my list.

[Holly IN]

Thanks for the book rec. I will have to get it and read it. I wasn't sure if Temple suggestions applied to my daughter as she seems to handle things much better than my daugther can. :)

 

Thanks!!

 

Holly

[wapiti]

If it will allow her a better chance to score well on the SAT I'd go for the update closer to time for the test.

 

 

This isn't typically how it works with the College Board. My understanding is that there needs to be a paper trail of scores and accommodations. A single evaluation near to the time of the SATs by itself is not likely enough (and it does not sound like an evaluation with IQ and achievement testing has ever been done for the student in question). A diagnosis from five years old is not what the College Board is looking for. OP, consult the high school or learning challenges board about the SAT accommodations issue - it has been discussed before and it is important to plan ahead.

 

For a 13 y.o., I'd test now and plan to update that testing one more time before the SATs. I'd consult a neuropsych or ed psych experienced in getting students accommodations with the College Board for the SATs to discuss a timeline and other aspects.

 

Plus, OP, if this student turns out to be 2e, understanding and developing strengths can be absolutely critical for self-confidence. That alone is a good reason to test, along with ruling out other LDs.

[Holly IN]

2e?? What does that mean?

 

Also so the papertrail wouldn't matter if it came from beh ped. and neurologist?? I have to keep getting her evaluated??

 

Sorry just trying to understand here.

 

Thanks!!

 

Holly

[Holly IN]

Also I will be talking with a friend of mine this Saturday whose son is aspergers and is going to college right now (living at home but in college). She can let me know about the college stuff since she will be going local if she goes.

 

Holly

[wapiti]

2e?? What does that mean?

 

Also so the papertrail wouldn't matter if it came from beh ped. and neurologist?? I have to keep getting her evaluated??

 

Sorry just trying to understand here.

 

Thanks!!

 

Holly

 

2e = twice-exceptional = gifted with a learning disability. "Very very smart but not in school" sounds like classic 2e. It is so critical for these kids to understand their combination of strengths and weaknesses, to shore up the weaknesses and absolutely not neglect developing the strengths even in the face of the weaknesses. These are the kids who sometimes fall through the cracks in PS because their weaknesses and strengths sometimes "cancel each other out" and they are not performing high enough or low enough to get noticed.

 

I'm no expert on the paper trail, but it is *extremely likely* that you need neuropsych (or ed psych) testing for IQ and achievement levels. IQ testing can show weaknesses for processing speed, working memory, etc. and something needs to be below a particular percentile in order for the College Board to grant accommodations. This is very specific! A diagnosis in the DSM is required but is not enough.

 

Plus, if she hasn't had any evaluations in 8 years, I think it's more than time for an update, now that she has grown so much and right as she's about to start high school.

[Holly IN]

Ok I will have to talk to hubby about it and see if I can get him to agree for further eval. She is far from ready to go into high school work. She is doing school all the time due to her difficulties. We also need to push her more but not sure how much to push her.

 

Also will talk to my friend about who to go to that is homeschool friendly for eval on IQ and achievements. I really do not want to go through another eval on autism (we did that so many times....)

 

Thanks!

 

Holly

[wapiti]

I think that's right, ask around for an ed psych or neuropsych for an "educational evaluation" or evaluation for learning disabilities, for IQ and achievement testing (especially look for someone experienced with twice-exceptional students - not any old psych will do!). I would not see the types of docs you saw in the past for this sort of evaluation.

 

Plus, I would NOT assume that all your student's difficulties - whatever they are - can necessarily be lumped under autism spectrum and/or related disorders. There may be much more specific LDs to consider. She deserves to know about these, and knowing may help you both. IMO this is even more important than the accommodations issue.

 

Some threads re: accommodations that might help you (especially note Kai/EKS's posts on this):

 

http://forums.welltr...accommodations/ .

 

http://forums.welltr...371650-college/

http://forums.welltr...-homeschooling/

http://forums.welltr...the-sat-or-act/

http://forums.welltr...lenged-student/

http://forums.welltr...lenged-student/

[Holly IN]

Thanks for the recs of threads. Will check them out.

 

Holly

[Holly IN]

Wow these threads are gold mine. Whew! Def need to print these off!!

 

Holly

[MomatHWTK]

I can give you the name of an ed psych in Evansville that can do the IQ, etc. PM me if interested.

[Holly IN]

I will PM you MomatHWTK as soon as pm starts working again. :)

 

Thanks

Holly

[Crimson Wife]

Michelle Garcia Winner has some good books on social thinking that might be helpful for your DD to read if the social skills groups in your area aren't very helpful.

[Holly IN]

Thank you!! :) I will check it out.

[thebacabunch]

I can totally see how my comment came across as harsh. I don't think I meant it to be a slap in the face, but more tough love. I am so sorry. I really am. I come from a unique perspective as I have a child with autism and before I had kids I worked for years at a cutting edge school for kids with autism. I have watched my dd go from a kiddo who could not handle sitting in a different chair or having old ladies look at her (weird, I know) without being covered in hives to a girl who is finally starting to make a few friends. Behavioral therapy has been a proven help to people with autism. I feel like denying something to a child that can help them deal with the anxiety and lack of understanding of social situations is neglect.

 

I want my daughter to be who she is. She will always be the square peg trying to fit in a world of round holes. I don't think she is in any way broken. I love her. She is my child. I am not just trying to make her seem more normal for my own comfort.

 

In the internet world we take off our filters. I might say online what I keep to myself in my day to day life. I am working on this. Please know that I was not coming from a place of judgement. I am passionate about helping people with autism and always have been.

[MomatHWTK]

Still comin' off pretty judgmental. I'm not sure "neglect" is much more flattering than "abuse."

[Rebecca VA]

Thebacabunch, can you tell us what kinds of therapy your daughter is participating in? What kinds of things does she do in behavioral therapy? (I'm honestly interested; this isn't a snarky question.) Is it covered by insurance, and how did you find the therapist?

 

Is there a window of opportunity (for example, before about age 12) for this kind of therapy to really work, or can an autistic person of age any pursue it?

 

Thanks in advance for any insights you can give us!

[Alexigail]

RE: Behavioral therapy

I worked in behavioral therapy before I had kids, have a neice and nephew with autism, and am currently having my own son evaluated for developmental issues. My humble opinion is that behavioral therapy can be wonderful for some kids but not all. Its also very expensive, and if done improperly can create more problems than it solves. Its difficult to find a good team because there's a lot of disagreement about how it should be done. Finding the right path for a child with ASD can put a lot of pressure on families.

My point is that there is never going to be a one size fits all answer for kids with autism and not everyone has access to the best therapies anyway. I'm so grossed out when people look at a post online, decide they know whats best for someone elses kid and try to tell them that any other choice is abuse or neglect. It's not. And more importantly it minimizes the experiences of special needs and other children who do experience abuse.

I'm sorry if I've hijacked the post. That really got under my skin.

[Holly IN]

It seems like most neuropsych or ed-psych are not very homeschool friendly. Dh said he doesn't believe our daughter will do well in college due to her issues. He is however understanding that we need to get her tested for other things to help ME teach her. If she can do college great but it is not a lost cause in his eyes. :) All he wants for her is to graduate high school. I told him the testing will help me to help her graduate.

 

Btw I did forget to mention she does have brain damage (minimal) that is called PVL(due to lack of oxyegen during c-seciton.birth) however it is very mild. If you search PVL on the web it sounds very bleak and terrible. Her neurologist said she has a mild case of it.

 

Still trying to look for one in Indianapolis. I might have to go to Evansville (thank you for the recs mamathwtk)

 

Holly

[Holly IN]

Behavioral therapy has been a proven help to people with autism. I feel like denying something to a child that can help them deal with the anxiety and lack of understanding of social situations is neglect.

 

I want my daughter to be who she is. I am passionate about helping people with autism and always have been.

Now you are accusing me of neglect??? yes you say tough love but I still say a slap in the face. We have done many types of therapies and most have done harm than good for my daughter. I would never ever tell a parent they are neglecting their child from not doing therapy or its abuse to not do therapy. You have NO idea what we have done for our daughter. NO IDEA!! So I think you need to stop right here.

 

I do understand you are very passionate about helping people with autism but the statement you are making is NOT helping me at all. Abuse or neglect used in a post in response to mine is a SLAP in the face and very hurtful whether you intended or not.

 

I want the best for my daughter!! I have to understand where SHE is coming from and respect that! If you are going to continue to throw around abuse or neglect on my thread then you need to take it elsewhere. I am sorry but I really do NOT need this type of advice or a scolding that I am abusing or neglecting my daughter.

 

Sorry if this post is offensive to you or others but I was very nice the first time in stating what you said was a slap in my face. It is ok to criticize but to tell me I am neglecting or abusing my daughter.....Why do you think I posted my questions??? My question was never about therapies but about re-evaluations.

 

Whew off my soapbox....sorry guys!

 

Again sorry. I was really needing genuine help not a smack. :( Thank you to the rest that helped me with my questions. :)

 

Thank you for taking the time to tell me the stuff I need to know about papertrails and SATs.

 

 

Holly IN

[Crimson Wife]

There are some parents who are in denial about their child being "on the spectrum" and aren't addressing the symptoms at all. It's one thing to decide to work with the child at home when the professional "experts" available aren't a good "fit" for the child. It's quite another thing to refuse to do anything at all.

 

Unfortunately, I've seen the latter kind of neglect in the HS community. I've seen obviously Aspie/HFA kids' social difficulties explained away as a factor of being highly gifted. That IMHO is a load of B.S. (pardon my French). There are plenty of HG+ individuals who are really good at interpersonal interactions, including my social butterfly oldest DD. Your kid isn't struggling socially because he/she is "too smart" for average Joes & Janes. Your kid is "on the spectrum" and needs some sort of intervention. Doesn't necessarily have to be professional therapy, but you can't just ignore the elephant in the room.

[MomatHWTK]

Again, placing your own vision of what is the "best" for someone else's child. I don't think we all have to be crammed into the round hole. Sometimes it's ok to keep looking for the right square.