Update 7/21: DD8 saw a psychiatrist for full evaluation

[riu girl]

Gracyn at age 3/4 was diagnosed with severe/profound ADHD, ASD tendencies (but I was told over and over again that she was NOT autistic) and SID.

Since then I have seen behaviours that did not resemble ADHD, but something else. Finally the school board has re-assessed her and have come up with the diagnose Autism. I am so upset. I knew in my heart that for years she wasn't ADHD but to actually be told that, this is hard. I haven't received the official word yet (will at the school meeting) but the teacher has basically told me this is the situation (very high functioning ASD). I feel if I hadn't pushed for the re-assessment, I would be happier now. I only pushed for it because they are planning to take away her in school support next year since she didn't meet the criteria anymore (she is above grade level and her behaviour is much better then in the past). I thought that getting another diagnose might help me get support for next year.

Sorry to ramble.
My question: I am very familiar with ADHD but know very little about autism. Can anyone tell me about/point me to a web site that explains the basics of it so I will have a little better understanding before the official school meeting.

I shouldn't be so sad, I just am. Between this, my fathers terminal illness and DH may be losing his job next week (company might be closing) I just feel done in. Usually I am so optimistic and always look on the bright side, but I just can't right now. There are people on this board that have children with life threatening situations and I should feel so fortunate that Gracyn is physically so healthy.
Don't worry, I'm sure by tomorrow I will be ok.
Suzy V.

[Wish I lived in Fl]

I feel if I hadn't pushed for the re-assessment, I would be happier now.

Sometimes ignorance is bliss but there is a price. It seems like the earlier and more intervention, the better the quality of life for children with Autistic tendencies.

I'd rather know earlier and get as much help as possible for my child than look back with regret because child didn't receive additional help until failing in school or socially.

DH and I feel guilty because our DS had a milk intolerance that was not diagnosed until 18 months. He was irritable, screamed in pain a lot, would scream at 20 minute intervals throughout the night. Our Dr. said it was not a "true" allergy and to give him milk. He suffered and we suffered until allergist said it was an intolerance and not to give him milk or milk products.
DD we knew had the same intolerance from the 3rd day.Her life has been much more pleasant now we know what to do and not do.

[leise]

Rui Girl, you sound like you are having a very tough time, my heart goes out to you...:grouphug:

Just remember that your DD is still the same little girl, she just has another new label, for the purposes of her education. It can be horrible when you get a diagnosis, however useful it might be , whether you expected it or not, or even if you have been waiting for it or not. It takes a while to get your head round it, and it all seems so final. But she is still exactly the same person she was before this label was attached, her life goes on unaffected.

Hopefully it will prove useful that she has this diagnosis. Just take your time and read up about it all. It is ten times scarier when you are faced with an unfamiliar condition. The thing with autism though is that every child is so different and has difficulties in different ways, albeit in the same areas of communication , social interaction and flexibility of mind. Your daughter's particular brand, well you are the expert on that, you've been dealing with it for 8 years.

Sorry I haven't got any links, but hopefully someone else will post some..

Good luck and more hugs... :hug:

Leise

[Mellie0119]

I know in Texas, you can request an independant (outside) eval that the school district has to pay for. I'd feel better knowing, if they were trying to cut her services and help anyhow, this should prevent that. Keep in mind, that changing the name on the diagnosis is just that- a name change. It doesn't change the progess your daughter has made and will make and it doesn't change anything else about her. :grouphug: DS has been through upmteen evals and has had about 3 or 4 different diagnosis given. The most current one (and I'm thinking it's not right, but that's another story) is Language Disorder, NOS with PDD Tendancies. Keep pushing for a new eval if you don't agree with the current DX. We're going to yet another eval in the fall trying to get a DX that we feel is complete and accurate.

[roseprincess]

Riu girl,
:grouphug:
I will keep you in my prayers about your dd, your dh's job and your dfather.
Sounds like you are going thru a lot right now.

As of your dd's new diagnosis of high-functioning autism, don't let it get you down. It's not the end of the world. In an earlier post a few months back, I remember you talked about your dd was in a writing or reading contest of some sort? Didn't she win? She is a very smart girl. You are proud of her, I'm sure. My ds, who is 8, is also h.f. autistic. He got in the gifted program at school recently! Sometimes there are hidden blessings with kids who are h.f. autistic/ Aspergers as of giftedness.
I'm sure it will take a little time for the diagnosis to sink in.
I'm hoping your dd will get her school services back now that she has the official diag.

As of autism websites, I would recommend www.autismillinois.com ( gives a complete explaination of autism.)
Also recommend www.autismmedia.org ( a friend of mine and her dh started this website to search for causes of autism.More of media based interviews of doctors, specialists about causes and different treatments for autism)

Also recommend www.autismspeaks.org

You can PM me if you want to talk, ask questions.
Keep us posted on how you are doing and about your dd's services.

Rosemarie :flower:

[lewdyan1]

I just wanted to send a :hug: your way. My children aren't Autistic,they have other labels. The most important thing is that you fight for the services she needs...Don't let the school use the label to dictate her services, but rather focus on her actual needs. Like the previous poster who said her child is in gifted, if you looked only at the label, her child would never be placed in a gifted class. Stay strong and know you have an awesome support here. :goodvibes

[Nik's Mom]

:grouphug: Sending hugs your way! I was in the same boat as you! My ds always showed some signs of autism. I took him to his pediatrician several times since he was 2, with the same complaints. Well, they kept saying, there's nothing wrong. I finally switched doctors and they said he had autistic tendencies or PDD. He started speech therapy at 4 and entered a special day class at 4. I continued to stress my concerns. Well, in March he was officially diagnosed with high functioning autism. I felt terrible, but now I realize that we did the right thing. It's important to get a proper diagnosis in order to get the right help for your child. Hang in there!
I know I took great comfort from the many kind words of comfort that I received from this board when we were going through our difficult time. I hope you will find comfort too. Hang out here when you need hugs. :grouphug:
In terms of reading about autism, check out http://www.autism-society.org

Sherri

[Rosie]

RIU Girl:grouphug:

I know how you feel. Despite telling Doctors and Teachers my fears for my DS it took 4 long years to get a similar diagnosis (DS has Asperger syndrome and ASD). Once the diagnosis came I was struggling to come to terms with the fact that my Mum was terminally ill with Cancer and only had twelve months left with us. Why does it never rain but it pours?

I felt utterly desolate and DH didn't accept that our beautiful boy had an incurable condition. We had a very difficult time. Sharing your feelings may help and you are absolutely typical of any loving parent to question your own actions.

Two years later from DS's diagnosis I am feeling very different. I am so proud of my DS and I work hard at knowing how all the Agencies involved with his Health and Education work. I cooperate with those who can help but don't assume that they are in control. We rejected Ritalin when DS was distressed and difficult to manage in School. I felt Ritalin was being given to control symptoms but not address issues directly. Although there are many common behaviours for those people on the Autistic spectrum, each person is different and it takes time to discover how best to help them.

I am in the UK so it would probably not be helpful for me to point you to information as it may not be relevant to you. Just know that there are many people who will listen to your needs as a parent, and please take care of yourself - your DD needs you more than anyone else in this world.

I hope others on this board can help you. We are thinking of you.

Regards
Rosie

[arubalisa]

Sorry to hear you have had all of these burdens lumped on you at one time. We are fostering to adopt a beautiful, just turned 9 yo dd. She moved in in September and had always been labeled "just different". Lucky for us, DH is an elementary spec ed teacher. He asked for an Austism eval in October. We had the diagnosis of Asperger's (high functioning autism) right before Thanksgiving. Our dd is the best thing to ever happen to us, but no two days are the same and we take each day as it comes.

Reading, lots of reading...
Autism Spectrum/Asperger's/PDD-NOS www.cdc.gov/ncbddd/dd/ddautism.htm
Autism Spectrum/Asperger's/PDD-NOS--- Symptoms www.cdc.gov/ncbddd/autism/asd_symptoms.htm
Asperger's & other autism spectrum disorders' criteria
web.syr.edu/~rjkopp/data/dsm_criteria.html
web.syr.edu/~rjkopp/data/as_diag_list.html

PDD (includes autism, asperger's) www.autism-biomed.org/dsm-iv.htm

Fantastic insight on "what the dsm IV means/meant to me" by a woman with Asperger's www.udel.edu/bkirby/asperger/asmeans1.html

Autism and biology web.sfn.org/content/Publications/BrainBriefings/autism.html

Autism/From MayoClinic.com/Special to CNN.com
www.cnn.com/HEALTH/library/DS/00348.html

Asperger's syndrome/From MayoClinic.com/Special to CNN.com
www.cnn.com/HEALTH/library/DS/00551.html

Speeech pattern for a child with Asperger's www.pediatricneurology.com/

www.aspergers.com/

TIME Magazine: The Secrets of Autism www.time.com/time/covers/...rgers.html

OASIS (On-Line Asperger Syndrome Information & Support)www.udel.edu/bkirby/asperger/

Autism Society of America www.autism-society.org/site/PageServer

http://groups.yahoo.com/group/AspergersSupport/

I hope these get you started. If you need support, if only a shoulder to cry on email or PM me.

[billysarmywife]

I am so sorry to hear that you have so many "hard" things going on at once. So many of these wonderful disers have offered a lot of very useful sites to you. So I just have one more to add www.wiautism.com. I worked for three years for this agency as a behavioral thereapist for children ages 2-12 that had "high functioning ASD". It is a truly wonderful program, that I would highly recommend! They offer services world wide, yes even in Canada! I want you to know that there is light at the end of the tunnel and so many great resources out there! If you are in need/want of additional information I would be happy to help. I wish you the best of luck! :wave2: Kristi

[JoannaOhio]

I think there's going to be a program about autism on CNN Sunday evening (May 22nd). I'm visiting family right now, and I left my TV Guide at home, so I can't check it for sure.

Just checked the CNN web site.
"Autism Is A World " will be shown on Sunday, May 22, 8 p.m., 11 p.m.
and again on Saturday, May 28, 3 p.m., 8 p.m., 11 p.m.

Here's a link to the page with more information:
http://www.cnn.com/CNN/Programs/presents/

:grouphug:

[mbb]

:grouphug: :grouphug: :grouphug: :grouphug:

thinking about you...
:sunny:

[DisCharmed]

I just had to reply to this. I am a teacher in the UK and I've taught a fair few autistic kids over the past few years. I can know the initial shock of diagnosis is hard but it passes and your daughter will simply become Gracyn again. As individual as any other child.

I truly enjoy teaching ASD and aspergers kids more than any other (and I teach them in a mainstream class) they just have so much to offer. I teach year 1 (age 5-6) and I can usually teach them enough strategies over the year to get the kids fully independent within class.

I've been exactly where you are, terminally ill mother and a child obviously 'different'. But now I'm 5 years on. My child is a high achieving, fun individual, in the top few in his class. So chin up as we say in England and I wish you the very best with the school authorities. :grouphug:

[Stitchfans]

Sending hugs your way too. :grouphug:
I work with high school students muti needs. Some autisic and some downs syndrome. There is different "levels" of autisim from what I have seen with the students. I am by no means an expert. I am a teacher's aid. But as someone else posted she is still the same little girl. I wish you and your DD the best.

[lajones81]

Gracyn at age 3/4 was diagnosed with severe/profound ADHD, ASD tendencies (but I was told over and over again that she was NOT autistic) and SID.

Since then I have seen behaviours that did not resemble ADHD, but something else. Finally the school board has re-assessed her and have come up with the diagnose Autism. I am so upset. I knew in my heart that for years she wasn't ADHD but to actually be told that, this is hard. I haven't received the official word yet (will at the school meeting) but the teacher has basically told me this is the situation (very high functioning ASD). I feel if I hadn't pushed for the re-assessment, I would be happier now. I only pushed for it because they are planning to take away her in school support next year since she didn't meet the criteria anymore (she is above grade level and her behaviour is much better then in the past). I thought that getting another diagnose might help me get support for next year.

Sorry to ramble.
My question: I am very familiar with ADHD but know very little about autism. Can anyone tell me about/point me to a web site that explains the basics of it so I will have a little better understanding before the official school meeting.

I shouldn't be so sad, I just am. Between this, my fathers terminal illness and DH may be losing his job next week (company might be closing) I just feel done in. Usually I am so optimistic and always look on the bright side, but I just can't right now. There are people on this board that have children with life threatening situations and I should feel so fortunate that Gracyn is physically so healthy.
Don't worry, I'm sure by tomorrow I will be ok.
Suzy V.

Suzy,
I, too, am sending a :hug: your way! :)

Although I'm not a parent, I can only imagine what you are feeling. I'm guessing that you are feeling so many emotions and I know that is normal. Although it's not related to autism, I remember when my dad was diagnosed with cancer. I felt emotions that I didn't even know existed. I was scared about everything! I know that it may not sound like a comfort, but everything will work out in due time.

I have an aunt and cousin who have ADHD. Although they are much older than your daughter, they have both succeeded in school (and life, in general!) in part due to proper medication. I'm sure that you will be in contact with your child's pediatrician to help your daughter.

I am a teacher and in the past two years I have had students with ADHD and Autism. The best advice I can give you is to be an advocate for your child. You are doing the right thing by doing your research about Autism.

Use the resources that you have around you - members from the intervention team (at our school that includes the social worker, OT, etc.) Ask these team members what you can do - if anything at home? How can you help your daughter? In addition, ask them how they will help your child. What services can they offer her? What are the options, alternatives, etc? I've seen many different types of parents - ones who are sure they know what is right and ones who are intimidated by the team that has evaluated their child. I can totally understand how scary it must be when a group of individuals tells you about your child. Listen to their opinions and be prepared with your own list of concerns and questions. For example, I have a re-eval meeting tomorrow for my Autistic student. There are 17 people on the invite list because he receives so many services. To be honest, I'm a bit nervous about presenting my information with so many people present!

If you don't understand something, do ask! You have the right to call an IEP meeting at anytime while your child has an IEP. Therefore, if you feel that something needs to be addressed - talk to the special education teacher and, if need be, ask to set up a meeting. You are Gracyn's advocate because at this time she cannot speak to her wishes and desires about her education.

I hope that I gave you some good information and haven't scared you. If you have any other questions, please do ask.

Thinking of you,
Lisa

[riu girl]

Thanks for the support everyone. I have spent some time looking at the web sites that have been sent to me from fellow DISers and have some information now. The other day when I wrote the original post, emotionally I was a disaster. But by now I am much better. Gracyn is who she is and as a parent I can just support her as much as I can. Easier said then done, but at least I can try my best.

Over the years Gracyn has had a ton of intervention (OT, Speech, 3 behavioural therapists, infant/child development worker, private tutor, resource teacher, Physio, full time in school support, etc etc).

At this point she has been discharged from all services/programs except she has an Educational Assistant (in school support person) 50% of the day. Due to high academic achievement (she is above grade level in all areas, except writing) and huge behavioural gains at school, she will probably not have any in school support next year. Which I'm not too thrilled about although the school says this is good news. They say she simply does not meet the criteria any longer. I hope that is the case and not just a budget cut of some sort.

Question: What supports/services do kids at age 8 with either high functioning autism or aspergers syndrome (I won't know exact diagnose until official school meeting next month) usually have? There is a support group I am considering joining although I don't know if I will or not. Gracyn will not see the doctor until I get the official word from the school but the last time we saw the doctor all she recommended is to keep her involved with groups of peers (swimming lessons, brownies etc) to help improve her social skills (which are weak). She has never been medicated and the doctor took one look at her report card and said as long as she keeps getting the marks she does (A's and B's) , she doesn't need meds. Which is great since thats the last thing I want to do at this point.

Thanks again for all of the information and support shown on this board. Its funny, when I first got the word from the teacher that the evaluator has some information from the assessments, which by asking the teacher VERY direct questions turns out the diagnose will be high functioning autism or aspergers , I first wrote my OP on this board instead of calling my mom. I don't want to get all sappy, but I will say that there is a lot of love from DISers.
Again, my thanks to all who read and posted on this.

Suzy V.

[lewdyan1]

At this point she has been discharged from all services/programs except she has an Educational Assistant (in school support person) 50% of the day. Due to high academic achievement (she is above grade level in all areas, except writing) and huge behavioural gains at school, she will probably not have any in school support next year. Which I'm not too thrilled about although the school says this is good news. They say she simply does not meet the criteria any longer. I hope that is the case and not just a budget cut of some sort.

Whenever this is discussed with my son's IEP team, I say that my DS is achieveing at this level because of the services he receives and if they are taken away, then he won't have the scores that he is getting. He definitely helps the school ESE score averages. Can you approach it this way, that she needs the services in order to continue at the level she's at? Just a thought.

[riu girl]

I have never thought about approaching it this way. Thanks for the suggestion. The school has told me that the academic criteria for an Educational Assistant ( I think it is called in school support in the US) is at least two years behind. I have briefly mentioned (to the teacher, not in an IEP/IPRC meeting) that without having an EA with her, I'm afraid that she will have a harder time academically (obviously she will) but have been told that if she does fall far behind, they can always apply for support again. I think that the school thinks I am a worry wort (which I am). All I keep hearing about is the wonderful improvement in the last two years (behavioural and academic) and that it is time to let her try things on her own (without support). For me, it is just hard having a failure thrive baby/child to actually let her have much independence. Ex. I am afraid to take the training wheels off her bike, JUST IN CASE. If I wasn't so paranoid about her, I really think that in school support would have been taken away completely this year.

Back on track, thanks again. I will print out what you said and say those exact word at the meeting.
Thank you
Suzy V.

[tinkerbelle22]

Dear Riu Girl, I'm glad you're feeling better. It can sure knock the wind out of you when you get news like that - but like someone said very wisely on this thread earlier - she is still the same wonderful girl. She hasn't changed, only a label has. And as a mother of an 8 year old autistic son, I can tell you that the word autistic is like labeling your child "blonde" or "size 8 shoes", i.e. it is so broad and far ranging. My son is very sociable and affectionate, but has an approximately 4 year delay in speech comprehension. Others have above average communication skills but lack social skills. Your child hasn't changed, they've just decided it would be more useful to use this label. Hopefully, it will mean that you won't lose any services and probably stand to gain some more. The main thing is, is that it is NOT A PROGNOSIS. This label will not stand in her way to succeed as she was always going to succeed - beautifully I'm sure. FYI, in the states, kids with Aspergers/HFA often can receive occupational therapy, speech therapy, social skills therapy and even "Floortime" or Applied Behavioral Therapy. Big, big hug to you and your whole family...

[arubalisa]

Hi Suzy,

Our dd, is the same as yours, being above average in all subjects with this exception of writing. Her teacher was extremely lenient on her this yesterday but today is the last day of school. . .

Look at the links below. DH and I are especially going to emphasize in her IEP the "Modification/Adaptations/Support Checklist". Our dd has never had an aid, however it is necessary that the teacher adhere to certain items on the list-
1. Protect the child from bullying and teasing
2. Praise classmates who treat dd with compassion
3. Have a "buddy" in the classroom- Sit next to buddy so buddy can remind the child to stay on task, listen to lesson, tutor, assist in checklist for assignments due, homework and books which need to be brough home
4.Structure, structure, structure, a predictable environment, establish routines
5. Avoid surprises, reduce distractions
6. We will need to avoid teachers who are "screamers", they reduce dd to tears, even if the sreaming is not directed at her

Here are some other resources for you, I hope they help!

Asperger Info: Specially Designed Instructions For Educators: IEP
Modification/Adaptations/Support Checklist
www.udel.edu/bkirby/asper...klist.html

Be prepared for an IEP meeting - Partnership
www.partnershipforlearnin...icleID=367

Suggestions for IEP goals for students with Autism Spectrum Disorders
http://members.tripod.com/autism4dads/iep_goals.htm

Be Prepared For An IEP Meeting
www.partnershipforlearnin...icleID=367

Asperger Info: IEP GOALS
www.udel.edu/bkirby/asper...Goals.html

IEP Information and Tips
www.parentsinc.org/newsle...ptips.html

[mlwear]

www.autism-society.org was suggested. When you go to their site find the link that lists the chapters. Find the one nearest you. Give them a call. Likely they have someone designated to talk with parents of newly dx'd children. Most will also send you a packet of information.
Services: Many vary from state to state. Often you have to dig around for these. Ask others that you encounter in your situation.
Have you considered a private assessment by a developmental pediatrician, pediatric neurologist or psychologist. Insurance may cover it. (ours did). In our case I found them to be much more useful than the school. Also, their reports are very helpful when discussing school services.
This is a very difficult time. Many of us completely understand. :grouphug:

[Figment1964]

This is a very difficult time. Many of us completely understand. :grouphug:

::yes:: I have nothing more to add but totally agree with the fact that many of us do understand. Hang in there!

[riu girl]

Update: I am now more confused then ever. I would appreciate some opinions. I just came from the official meeting at school re: DD8s assessment. Overall: they said that the severe/profound ADHD has decreased to mild ADHD. So that is good news. Re: the aspergers test that was performed, I was told that yes she did receive an elevated score that may indicate that she has a very mild form of aspergers but the tester himself explained that on the test DD8 scored extrememely high on the cognitive component (as Aspergers kids do) but generally scored NOT within Aspergers range in most of the sub tests. He said that there were a couple of sub tests with elevated scores and this combined with the extremely high cognitive scores (within the Aspergers test) resulted in a score high enough to call her Aspergers. But the evaluator said that he felt the score was not an accurate score and he would NOT classify her as Aspergers. He also said that after spending time with her and talking to the teachers etc at the school she just does not fit the criteria to be an Aspergers kid AT ALL.

I hope that this makes more sense to someone else since it does not make a lot of sense to me. I like things to be "cut and dry" and now I am simply confused. I should be very happy but now I'm not sure what the dx's are. I assume it would be mild ADHD, and maybe a few Aspergers tendencies?? He didn't mention SID to me at all. I don't know if he tested for it seperately or if it was part of the Aspergers test, or if this was looked at at all.

Regarding recommendations they are suggesting more play dates (one on one ) with peers, a social skills group at school (which she has been in for two years already). I asked them about behavioural agencies in the community and surrounding area and they were very aware of them and have suggested/referred kids to them but felt that she has matured so much in the last year that she would need these programs. They are also eliminating her in school support (which I agree with since her behaviour/academics have come a LONG way in the last couple of years).

I am happy about the outcome. I am just still trying to process all of the information (it was a 1.5 hour meeting). I just always thought that a kid this intelligent (ex.she explained DNA tonight to me without anybody teaching it to her, she read a book about it she said) with poor social/emotional skills would have to be labelled something besides ADHD.

Any thoughts would be GREATLY appreciated.
Suzy V.

[lewdyan1]

:hug: Not sure what to say, but wanted to give you a :hug:

[Nik's Mom]

I feel your frustration, Suzy! Don't you just want to scream? It's like an up and down roller coaster ride, but not fun at all! Just try to hang in there. We're here for you. I know for my ds, I'm going to look into something called regional center. It's a place that offers support and services for disabled children in our area. You may want to see if there is something like that in your area. As far as the school district goes, keep up the good fight! Don't let them try to give you the brush off and remove your child from services that she needs.
Keep your chin up! :flower: :grouphug:

[riu girl]

Thanks for the support. I just wish I knew if I had an asperger's kid or not? I know this may seem strange but I need to live a my life a certain way and the not quite knowing/being unsure of a particular situation is hard for me.
Form what I have written, anybody want to give their opinion whether I should think of her as Aspergers or not???
The school is bent on saying she's not, but the overall test results are saying yes or at least maybe!!!
Suzy V.

[Nik's Mom]

We had the same problem as you with our son. The school district kept saying he's not autistic, but our son's teachers thought he was. So we finally went to a pediatric neurologist. After testing, he diagnosed our son with high functioning autism and we provided that diagnosis to our school district for services. If you can get our child to a developmental pediatrician, they probably can give you a better idea of what she has.

[Maryr1]

Suzy, My thoughts and prayers are with you and your family. :grouphug: I always try to tell myself that once I know what I am dealing with, I am better able to work with it and do my best. The initial few days are always hard, but once I get my feet on the ground and my head clears, the path I am on becomes clearer.As you know, I am in a very similar situation with my DD.The best thing your daughter has by her side is YOU. Take care, take time for yourself,nuture yourself and know that you are not alone.
Your friend,
Mary :wave2:

[arubalisa]

Hi there Suzy!

My wife asked me to answer you; I am a Special Education Teacher in Georgia, near Atlanta. Many of you may not like what I have to say, since I have a habit of being “blunt”, from New Jersey, so give me a little break, :earsboy: Ok, here we go.

DSM IV states that Asperger’s and ADHD CANNOT coexist. You are one or the other. What are her IQ scores, there should be 2, full scale and verbal. What is the point spread? If it is extreme, greater than 20 points that I would say you have an Asperger’s kid. Would be called a non-verbal learning disability.

What specific tests did he give? Was one the ASD and the other a functional behavior assessment? Where they school trained, or an outside source?

Hate to say this but many teachers are clueless, you are the one living with her, and many times the symptoms for mild Asperger’s do not present at school, as well as many teachers do not know what to look for. This is due to the fact that many Asperger’s kids appear “normal” but have a few “quirks”. Many teachers just have experience in dealing with children that exhibit cognitive challenges.

I would find a person that is specifically trained to diagnosis Asperger’s, you can start at , http://www.aspergers.ca/

You daughter is very bright, she talks about DNA, and does she have a specific interest, like rocks? Does she prefer the company of adults to other children? Is she a little controlling with adults and children during an activity? Does she have a large vocabulary? Is her tone of voice “flat” at times and does not have any inflection?

These are just some of the top items to look at. Does she like computers? Does she respond to incentives and rewards that only make sense to her? How is her handwriting? Many Asperger’s kids have poor motor skills. What about tactile and sensory issues? Loud noises? Excellent hearing? Great sense of smell? Does she not care for dolls? Does she lack imaginative play?

Many times girls are not going to be diagnosed with Asperger’s, since typically if appears mainly in boys. It is not likely that any child that has Asperger’s, and then properly diagnosed has labels like ADHD, OCD, and Depression, Anxiety disorders as their disability since the Asperger’s can mask itself in many ways.

I would suggest you search out a person that only does Asperger’s diagnosis; good term to use is an Asperger’s Clinician as the key word to people.

Hope this helps, and please feel free to pm me directly if you like :wave2:

[roseprincess]

Suzy, I just want you to have some :grouphug:

Arubalisa's husband, I do disagree on the Asperger's and ADHD do not coexist.
I have seen it coexist. My ds has been diagnosed as ADHD by his pediatrician since age 3. My ds also has been diagnosed thru school with an autism specialist as PDD-NOS at age 2. He is 8 now. He actually is more Aspergers, even tho I never I got him officially diagnosed lately. We do Greenspan's floortime at our school district. I have been told throughout the years of my ds's floortime people that any kind of autism and ADHD can go hand in hand. They have seen it in my son and these floortime people have seen it some other autistic kids as well. My son just recently qualified in the Gifted program at school- scored very high in non-verbal, visual- spacial.
So, by observation and testing, yes, ADHD and anywhere in the autism spectrum disorder can coexist, maybe not in all autistic kids, but it can coexist. My dd also is ADHD as well, she is special needs also, not autistic,
but has a heart condition.

Everyone has different opinions, To each his own.

Rosemarie :flower:

[mbb]

:hug:

Any kind of testing/evaluation - that is not over an extended period of time - is only a "snapshot" of your child's behaviour's. Just like looking at a picture that you're unfamiliar with, it would be impossible to know what is beyond the borders of that snapshot...

It's all frustrating..and we're here to help...I wish I could help more:)

:sunny:

[Odie]

I have a 6 year old son daignosed as severly autistic. Always be wary of the school,s diagnosis. Their primary concern is not your child. They know first hand how much it can cost to provide appropriate services. Not sure about Canada, but in US we have a federal law know as IDEA which all states must comply with. I agree that you need to see your own specialist and not rely on the school's "expert's" opinion. What experience does that person have with diagnosing Aspergers? When it comes to your daugther, worry less about any stigmas or concerns over a label, autistic or not, and more about what services she can get with the appropriate diagnosis. The best piece of advice I got four years ago was stop talking about just the great things a child does, and ensure the person evaluating your child hears about everything bad. We all wish to brag about the good things they do, but without an evaluator knowing in detail all the bad, you'll never get an appropriate diagnosis. Hang in there!

[tinkerbelle22]

Dear Riu Girl -This would be my advice to you: first keep in mind that all of this - autism, asperger's, and even ADHD are part of a spectrum, a continuim - many shared symptoms, manisfestations, and approaches when addressing. It sounds like your daughter is somewhere on this continuim - and it may even change up or down or she may possess some qualities on one part of the spectrum and others on another part. First you have to look at what she NEEDS. Sounds like academically she is sailing along beautifully and behaviourly she is much improved. But socially ( and this is very important - don't let any educator every say this doesn't impact on education) she may have substantial needs. In order to qualify for those services (e.g. social skills training, peer mentoring, etc.) your school district may have to give her a classification of aspergers. I would find that out. In other words : first, what does she need and second get the diagnosis that will provide her with those services. If your school district won't give her that diagnosis, you can find a private evaluator/neurologist/psychologist who will.

The special educator who wrote above from New Jersey has a good grasp of aspergers when he asked you some of those questions e.g. relating better to adults, interesting incentives/rewards. Those will give you a good idea what to expect.

Good luck to you Riu Girl - your daughter sounds like she is making wonderful progress even though this possible diagnosis may sound more serious - In fact it may give you better insight into what was behind the ADHD all along - attention difficulties are not uncommon with aspergers or autism. She sounds terribly bright - and obviously much loved.

[mlwear]

Lots of good advice here that I won't repeat.
Your child sounds somewhat like my oldest DS. Youngest DS has classic autism. But older is much different. He has a gifted IQ, some sensory issues, many Aspergers-like qualities, but would be extremely high functioning. He has been given an ADHD label, but doesn't seem to quite fit. A developmental pediatrician suggested (didn't dx because exam wasn't extensive) Non-Verbal Learning Disability. Do a quick search and see what you think. I had never heard about it. Doc said characteristics mimic characteristics of Aspergers to those who aren't highly qualified. (I beleive Asperger originally included NVLD as part of Aspergers, but it is not separate---after a while the spectrum gets very broad.) Doc even said that if it gets him better services go ahead and let the school call it Aspergers. :confused3 I thought that was weird, but I'm sure he's had his years of fighting the schools.
Just an idea to explore. Best of luck.
PM me if you have any ?'s.

[riu girl]

:goodvibes I just can't believe the number of people who responded to/have read this thread. I don't want to sound like a total sap, but the support/compassion is beyond anything that I could ever imagined. If these events had occured in my life a year ago (prior to me finding DIS) I would have been at a total loss as to where to turn for support.

Things are good here. I have come to the conclusion that Gracyn (DD8) is who she is and all I can do is be the best parent/advocate parent I can be. So in a nutshell, thats what I am going to try and do. At this time, I am not going to get another Aspergers assessment. The school said over and over that although she scored within range of mild aspergers on the aspergers test she simply does meet the general characteristics/criteria and thats fine with me (for now). We are going to increase peer interaction (groups and one on one) as the school highly recommended (their only recommendation) and see how that goes.

I can't say thank you enough for all of the information/support offered. I am sitting here right now watching her (through the patio door) in the ditch in the front of our house catching frogs/snakes (and gosh knows what else :goodvibes ) and just feel so fortunate for who she is. She is an awesome blessing to our family.

Again, thank you.
Suzy V. :flower:

[SueM in MN]

:goodvibes :grouphug: :goodvibes

[Princess Mommy]

You have gotton some wonderful advice already!

I don't have a child with autism myself, but I can direct you to the school I work with: http://www.eden2.org/eden2.html

They might be able to send you some information as well...

Best of luck to you, and if you ever need anything please feel free to pm me. :goodvibes

[s&k'smom]

I haven't read all the posts but I will go back so if I am repeating I'm sorry but I'm a bit curious. A school board diagnosed your DD? Please get an independent eval done, psychologist, neurologist someone who is medically able to diagnosis her. That way you will know definately if this is her diagnosis. I say this because it will make all the difference in the world in regards to school and any state/federal benefits you may be able to receive now or in the future. Good luck.

[riu girl]

DD has been seen by a psychologist for a full evaluation. At the first appt. I took with us her most recent report card and the documentation that the school provided us from their evaluation in March.

The psychologist feels that she is NOT ASD but ADHD along with a language based learning disability, and anxiety. This is the first time an LD has been mentioned to us, we were surprised since her grades are so high. The doctor feels that there are problems with her working memory and her executive functioning and it will show up eventually academically. In these two areas mentioned above her test scores were still within average range (but low average) . One reason she felt her grades were so high was due to the fact that I spend at least 2 hours/day (even in the summer) working with DD academically to make sure she doesn't fall behind academically. Also she was privately turtored in SK and Grade 1.
fyi, her last report card had 8 A's, 3 B+'s (2 of these B+s: reading, writing ,art), and 1 B (gym).

My question: I forgot to ask the dr. about what exactly a language based LD is, any ideas???? Regarding her language she was in speech therapy from age 1 to 6 and then discharged due to her age. At age 6 she still showed a mild expressive delay (but other areas were at level). The school has done a language assessment and said she doesn't meet the criteria for extra help. They give me the impression they feel her speech is now at level in all areas.

I asked this dr. about HFA/Aspergers and she said there is a lot of overlap between diagnoses, but she felt no, she didn't meet near enough of the criteria and felt that she fit better as mild ADHD and language based LD and anxiety.
The doctor seemed shocked that she has never been on meds. She started telling us about concerta and another med I have never heard of (Risperal maybe), but she agreed that behvioural therapy is the way to go for now.

DD is not entering therapy of any sort right now, dr. only reccommended what the school did (tons of one on one and group peer interaction as well as keeping our home very structured). I was hoping that we would have come away with a few more suggestions/actual therapy options, not just having DD hang out with friends more.

Does this make any sense to anyone and please let me know anything about this type of LD.


Thank you
Suzy V.

[SueM in MN]

Dyslexia is one type of language based learning disorder.
Here's a site that has some good explanations of dyslexia that might carry over to other language based learning disabilities. (http://www.idaontario.com/dyslexia_ONBIDA_about_dyslexia.html) The FAQs on that site haas some good information that look like they would be common to a lot of LBLD (so I don't have to type all those words again). The grade level "common signs" might whow why the doctor aid it would become more evident as your DD gets older - the lower grades do a lot less reading. As you get to the upper grades there is a lot more reading and writing.

Here's another site that looks good. (http://www.kingsbury.org/learning_disability/index.asp) It also has quite a few links.

And here's an article with suggested activities (which it sounds like you already have done a lot of). (http://www.specialchild.com/archives/ia-038.html)

[lewdyan1]

I truly understand where you are coming from. My DS went through a long process until we finally got a dx very similar to yours. He is ADHD, GAD(general anxiety disorder) and gifted LD (he was SID, but that got dropped when he was in third grade as it didn't apply academically). We opted to go the medicine route as his ADHD wasn't condusive (sp) to behavior therapy! he takes two meds (ADHD and the GAD) and it took awhile to find the right combination.
We have an IEP which allows for accomodations in a regular classroom setting. His LD is a writing disorder. The accomodations directly address each of his disorders and have proven very successful!

If you have any questions, I would be happy to share with you some of his accommodations and how they help. Send me a pm.

Ps. Did the book ever get there?

Pss. he is also in speech therapy. :teeth:

[nwdisgal]

My son has ASD. He was diagnosed several years ago, and at the time, the neurodevelopmental pediatrician told me, "Don't focus on the label, focus on the intervention." That was good advice. Also, he told me "I think in ten years they may have a new name for what is going on with your son". Basically, what he was saying at the time is that Autism and Autistic Spectrum Disorder as a somewhat broad classification (just because they didn't have any other category to put the symptoms in), and as research continues, they'll find more specific categories coming out. The other thing I noticed having been in a support group of moms (and exchanging mommy notes) who had kids with ADHD, ASD and other similiar diagnosis is that there is a lot of crossover with sensory issues and such between the different disabilities. Certainly, I would get professional opinion in addition to what you have already done with the school and remember that many gifted individuals from our history, including the Albert Einstein were said to have been somewhere on that spectrum.



Good luck!

[Amaris]

:hug:

Any kind of testing/evaluation - that is not over an extended period of time - is only a "snapshot" of your child's behaviour's. Just like looking at a picture that you're unfamiliar with, it would be impossible to know what is beyond the borders of that snapshot...

It's all frustrating..and we're here to help...I wish I could help more:)

:sunny:

AMEN!

My daughter was diagnosed as autistic and mentally retarded at age 3 and at age 8 we now know she is actually gifted ( her IQ is higher than average) and has ONLY a language disorder ( AKA language based learning disability) ( her autistic like behaviors were because she could not communicate effectively and she was RETARDED because they scored her on a verbal iq scale and she had a language disorder!).

My son was diagnosed with pdd-nos ( a catch all part of the spectrum) at age 5 and it turns out he is profoundly gifted and learning disabled. He was diagnosed at the same quacky hospital as my daughter, that has an amazingly good reputation.

As someone who has travelled the road , my suggestion to you is to ALWAYS question a label and think outside of the box. I bought it hook line and sinker, and as they grew older, I could not believe what I saw before my eyes. The quirks and social issues completely disappeared as language came in ( how social can you be, and how long can you make eye contact when you have no languge?) the behaviors and solitary play disappeared completely.

I have since had both of them evaulated twice ( both at two different experts that had NO indication of past diagnoses) and have confirmed the truth and had their diagnoses reversed.

Now they are older (8 and 10) it is obvious to a duck that they are not even close the the spectrum. When kids are young, it is VERY difficult to pinpoint autism to any degree unless they are severly and profoundly autistic. These days they are putting everyone on the spectrum.

I would hate to see any family go through what we have gone though. If any of us pull out the ASD checklist, we would be amazed at how many of us have MANY signs of autism.

Just a FYI, children with language delays FREQUENTLY lack eye contact, have echolalia, and many other signs associated with autism. I highly recommend the books Late Talkers and the Einstein Theory if you suspect your child does not have autism spectrum disorder.

Treat your child for her symptoms , not the label!!! If you go that route , you will never go wrong, even if someone goofed with the diagnosis :)

[Amaris]

DSM IV states that Asperger’s and ADHD CANNOT coexist. You are one or the other. What are her IQ scores, there should be 2, full scale and verbal. What is the point spread? If it is extreme, greater than 20 points that I would say you have an Asperger’s kid. Would be called a non-verbal learning disability.

This can also indicate a language disorder, separate and apart from autism. If your child does NOT exhibit signs of aspergers or autism, and has the spread then think language disorder. My daughter has an extreme range between verbal and peformance. HOWEVER she is VERY social and always has been, has always had a wonderful imagination, and wants to please you... typical kid, in other words, except for the language problems.

Kids who have language disorders ( language based learning disability, language delay, whatever you want to call it) ALSO FREQUENTLY appear to be ADD. The ADD symptoms appear when the language demands are HIGHER than their undestanding. I watched my daughter ( who we have been told by the school and her doctor had ADD) when she was evaluated at the language disorders program at Vanderbilt University in Nashville, Tn. She was six at the time ( and supposedly autistic and retarded ). When they spoke to her on a 3 year old level she was 100% engaged. At a four year old level she was 100% engaged. When they hit the five year level, she started talking about unrelated stuff and walking around the room and NOT attending to the evaluator. She had a 18 month language delay. So, as soon as the language got too complex she tuned out and looked for grounding. At age 8 she is still delayed by a year and as long as we keep our language demands at a 7 year old level, she does not appear to be add at all! Once you start babbling, she is all over the place.

Anyway, enough from me, but I am hoping my story ( in two LONG posts) will help someone here who might not realize there is anything else but autism spectrum disorder when your child has these symptoms at an early age.