testing for "High Functioning Autism"

Liesl - posted on 10/19/2012

Hi,



It sounds like Aspergers which is not nearly as bad or scary as it sounds. When you do get a diagnosis it will be better for all of you. It takes time to come to terms with it - so give yourself time and read up on it. It helps when you know what your up against. Asperger's Children are complicated, honest, unique, beautiful children and they teach you to look at the world differently. It is challenging but also an honor to parent these children. Good Luck

Terri - posted on 10/11/2012

Hello Lacey, We are the grandparents of a 22 yr old young man. John, was a very active baby but at 2 yrs old had no speech. He was very focused on what interested him, and he may/ may not respond to his name. Bright lights would terrify him, surprises would make him cry. I worked in a schoolsystem and had raised 2 children. His Pediatricain told my daughter-in-law that "boys are slower maturing than girls." This was 1992. I recognized the differences in John and told my son and daughter-in-law my concerns; which was not a pleasant thing to do. After observing him for well over 6 months I knew a speech delay could be a myriad of issues. To make a long story short, I began to investigate speech delays and one day I saw Dr. Temple Grandin who has High Functionaing Autism which we now know as Aspergers Syndrome, on a talk show. I bought her book Unwritten Rules of Social Relationships. I began a comparison between her symptoms,and behavior and John's. I had a column for him and one for Temple. More than not he definitley had her symptoms. I then bought everyone of her books and read them from cover to cover. John went to Nursery school, Elementry school, Middle school, High School He was never diagnosed by the school (or labled as some would say) had wonderful teachers who took the time and care and sometime have an aide sit with him to teach him accordingly. He completed High School and 4 yrs of a Community College in Environmental Studies. He is now at a Maritime Academy advancing his Associate's Degree in Marine Environment. It's pretty strict compared to the normal college, regimented, strick guidlines, and stucture. He made it through 2 weeks of "boot camp" through "Recognician" and is now a full fledged 4C (Cadet). After the mandatory Sea Term (6 week cruise to the islands after Christmas break which is called a semester at school at sea) because of John's credits from Comm. College he will return as a Sophmore, so instead of 4 yrs he could graduate in 3 yrs.

I have never seen him so completely happy as I see him when he comes home on the weekends. It's co-ed. A degree from a Maritime Academy is a huge leap in the job market. My point here is for you to get her some early intervention as it's always better, to never lose hope, and to read Temple Grandin's books and compare your daughter to what you read. Our son and daughter in law were wonderful with him with my son always involved with his teachers all the way through the schools he attended. Maritime not included! John had all of the right people and places in his young life. He had friends, never had one problem in any school he attended and now knows full well he makes all of his own decisions. He'll talk to his Dad about things regarding classes etc. but he ultimately makes the decision. He heard about Maritime, visited and decided if he could get in that's where he wanted to go. Check out the Maritime Academys which are in the US and comprised of 3 states For State Tuitions They not only get a stellar education but they also get discipline and character building at the same time. Unlike a Coast Guard Acdemy they do not owe the government anything after graduation. I hope this has helped somewhat. I loved being in John's world which is a more logical and kind world than ours sometimes. I would be happy to speak privately with you if you like. Sincerely, Terri

Stephanie - posted on 09/11/2010

I have an 8 yr old son who has yet to be diagnosed. I started to think autism at age 4 and started to have him assessed a year later. Four months in to the asessment I gave up as I was not getting the practical help and the therapist was very difficult to deal with. It didn't seem to matter whether I had a diagnosis or not. Now I wish I had continued. He is struggling in school and I am now attempting to homeschool this year as attempts to have local services involved in public school failed. He "did not qualify" because we did not have a diagnosis and their observations did not warrant an assesment. Some similarities I see in your description of your daughter...my son is smart, does not socialize but loves to teach. He has no tolerance or patience but can sit and teach his brothers about his violin for an hour! He doesn't join group activities in school but can organize an entire party for them. His senses are also heightened to sight (knows where the lost keys are almost without fail), sound (my only child to cover his ears at the parades and by loud music), taste (won't drink mild if it has been out for more than 5 minutes) and smell (can tell if an item came from his father's house or mine by smelling it). I have struggled daily with expecting him to be normal when every day he would prove to me he has differences. I recommend you get her assessed and get all the help you can. It will help you both!

Melissa - posted on 09/10/2010

Please keep us updated as to how it goes next month. :) Make sure to tell her what to expect, which is that you are both going to go into a room where she will meet and play with some new people. They will use specific play techniques in addition to her medical records and your family history to evaluate her according to the DSM's criteria for autism spectrum disorders. Whatever they say, just know that labels are labels and nothing more. Good luck! :)

Jeanine - posted on 09/10/2010

If you haven't yet researched this, you may not realize that Autism is not an either/or thing-it's possible to be "a little" Autistic, or have a related situation called Asperger Syndrome. BTW, did you know that Dan Ackroyd has this? I would get the evaluation soon and don't panic! Your DD could be a little different and actually still be gifted. In any case, she'll still the the wonderful girl she always was but you may be able to get the special accomodations she may need with the results in hand.

Lacey - posted on 08/18/2009

i really appreciate all the advice and support...i finally got all the medical release forms signed and sent back in...now we're just waiting to hear if they think she should be tested or not.

Stacy - posted on 08/10/2009

Some of your daughters symptoms appear to be those of Aspergers, and others dont. I have an 11 year old son who was diagnosed with Aspergers 2 years ago, and it has forever changed the lives of my family. He too, as early as 4 years old would scream, and cover his ears at any type of alarm or whistle. Even still today, he can't tolerate loud volume on the radio, television, or in conversation. I often find him lost in thought, though he is totally aware of his surroundings. He lives in a virtual world through his Nintendo DSI and its there where he exhibits his creativity the most. Therapy sessions were never attended without it. Without the system, he would not particiapte. He lives for anything ART and has won several awards in the community and through school for his work. He also loves to write essays. He recently entered a essay contest sponsored by the ARC in which he had to write about how he could improve the quality of life for a disable person. He won 3rd place, and was the only winner in our county of all 5th graders! For my son, he knows he is different. He was able to utilize the way he himself is treated by others in school ( not many children understand him ), and how hard it is for him to express himself in a way "we" can understand him on paper, and won. Intellectually he functions on a 12th grade level, and will be entering 6th grade this year. He has a perfect 4.0 grade point average in school. Socially, he lacks the ability to adequately handle situations with his peers and often times will become aggressive out of frustration. He accepts no responsibility for his actions and everything is ALWAYS someone elses fault or someone else made him do it. Well, I could go on and on and on about my "Special" son...but I'm sure by now you've gotten somewhat of a feel for your own situation. If I can be of any help in anyway, please do not hesitate to contact me. I wish you and your daughter the best on her upcoming testing. Good Luck!

Bea - posted on 08/10/2009

My lovely boy is 9 now, but he has been displaying similar symptoms from a young age (although he had speech and language problems and is overly social). We have had him assessed recently, and he has been described as being high functioning, but rather than label him with the "autistic" label which could be a problem later on, he has been described as having "severe autistic traits". I know it is scary, but remember.....she is your special baby, NOTHING they say or do will stop you loving her for the magical, amazing child that she is!!

Lisa - posted on 08/09/2009

City busses, loud trucks, vacuum cleaner--with these and other things, my daughter would scream and crawl up on me. I couldn't use a blow dryer in the house until a few years ago. Once she was taught, she learned to read and write very quickly. It's the photo-memory thing. Autism takes on many different forms. It's good that your dr is recognizing this. Just make sure that's this is done by many people-it's supposed to be done this way, speech therapists, psychologists: different essessments, questionnaire for you also. This is a good thing, if she needs a little help, start now. Good luck!

IESHA - posted on 08/09/2009

Dont panic. Just know the sooner the better, an if this is something your daughter is gonna have to live with in life she can get help sooner an have everything provided for her needs. But to me (jus my opinion) it doesnt sound like autism,although im NOT a doctor but i do have a child who is autistic. So if she is im assuming its gonna be very high functioning!! Just have patience mom an be very understanding.

De Anna - posted on 08/09/2009

Hey, No need to be nervous about the testing.. It's no big deal. All they do is watch her play and talk to her. No needles or poking and prodding. my son is 10 years old and is Highly functional autistic. You are doing the best thing by getting her assessed at an early age. I have all the faith in the world that she will be just fine. I can already tell she has a mommy who loves her or you wouldn't be posting this seeking info from others to help you. Keep up the good work! Our kids and the many others like them are very special and unique. Be proud of her and always except her the way she is. Once she is diagnosed, she will be able to get whatever kind of services she needs in life. You are on the right track sweetie!

Sasha - posted on 08/09/2009

Quoting Lacey:

I actually get to be in the room with her while they play and talk to her. Otherwise i dont think they'd ever get an accurate evaluation, she panics and screams everytime shes away from me and will keep on screaming for hours and hours or until i come back.

It's geat that you get to be there.  I hope you do get to have a break now and then too, keep the batteries charged:)

Carey - posted on 08/09/2009

My 8 year old son has Aspergers along with a few other issues. He is very smart, in 2nd grade and reads at a 6th grade level. Its not the cognitive ability that Aspergers kids lack, its the social skills. Thats the hardest part, watching him want to play with others and not knowing how to get them to know that. He gets very nervous while trying to talk to other kids. He is fine with adults and younger kids, but kids his own age are so scary for him.

Lacey - posted on 08/08/2009

I actually get to be in the room with her while they play and talk to her. Otherwise i dont think they'd ever get an accurate evaluation, she panics and screams everytime shes away from me and will keep on screaming for hours and hours or until i come back.

Brenda - posted on 08/07/2009

I think she should be tested, but if the testing becomes to stressful for her nothing will be acheived from. Try talking to her and letting her know you will be right out side waiting. Use a positive reniforcement. Do not use food.

Lacey - posted on 08/07/2009

thank you all so much for all the information and support..it will be at least october before they are able to get her in for an evaluation but at least we're on the right track.

Ashlei-Niki - posted on 08/07/2009

it very well could be. I have a 7 year old brother with it and a 5 year old sister with asberghers (sp?). The testing is long and aggrivating, but its worth it. If your daughter does have autism and they diagnose it, they will will make sure you understand everything. Just make sure you stay calm and collected, and stick to her normal routine as much as possible.

Carol - posted on 08/07/2009

Boy are you right about the limitations. We were told that my granddaughter would not ever be able to speak normally, read, or learn effectively. Fortunately, she didn't hear them. We got early intervention for her, and right now she is 12, going into the 7th grade next year, reading her mother's Trixie Belden books, etc.
Tomorrow she will go up in front of the whole school to read a poem she wrote. You would never know to hear her now that she was totally nonverbal at 2 1/2, just making noises like a cat and hiding under furniture.
Thank God for early intervention and teachers who take the time to bring out the best in each child. Although she is in a special ed program, we are told she may be able to go main stream next year if her behaviors stay stable. She also has the problem of also being bipolar as well as the autism, so she treads a fine line.

Sasha - posted on 08/06/2009

It does sonund like aspergers. If it is, knowing now is great. at this early age, it will much easier to deal with the things that cause the biggest trouble in latter life - inflexibility in routine, obsession, etc. I would advise doing different things on different days, not having set meal times, and never having the same meal on the same day of the week. If you can do this, you are much less likly to have an adult who flips out because tuesday is apple pie day, or dinner is at 6 o'clock. And somehow even the non-verbal auties seem to know exactly what the time is. When you get the diagnosis, don't forget the doctor knows nothing about what your child is capable of. The limitations of the AS spectrum are only relevent for the one child that particular author knew, in reality there are no limits.

all the best, and let your daughter fly!!

Paulete - posted on 08/06/2009

your daughter sounds like she's very smart but go ahead and let her be assessed to put your mind at ease my son is 37 and they did not have the knowledge or technology they have today he was diagnosed so late

Carol - posted on 08/06/2009

Sounds very much like Aspergers Syndrome, a form of high-functioning autism. Most children on the spectrum are bothered by loud noises. My granddaughter puts her hands over her ears and cries if a loud motorcycle or truck goes by when she is outside. If your doctor is one you trust, then trust his judgment about testing. The earlier they are diagnosed, the earlier they can get help.

K. Erin - posted on 08/04/2009

i am not a doctor, but it sounds like my son and he has been tested and they say he is so high functioning that he isnt considered autistic, he just has autistic tendencies. It is nothing so bad, you are never given what you cannot handle, just remember that. I had to put my son in speech therapy since pre-k, now he is going to the 2nd grade, and i cannot get him to hush, lol. Don't worry, you can get help and your school system can test her on their dime. My son is about to be tested for Asperger's Syndrome.
If your daughter is going as far as to teach to other kids, that shows she is definitely high functioning in that she is socializing. If you notice a problem with her speech, if she isnt speaking or she is speaking backwards (on the ground, the cup is) then speech therapy will be a must. But other than that I couldnt help ya, we have limited resources where we are, but there are tons of groups that could help you out online and ask your doctor what other measures you can take. Be prepared because it is a shocking blow, but its one that must be dealt with, you love her just the same and you always will, learn all you can about parenting for a special needs child...that will save you both headaches in the long run.

Kristie - posted on 08/04/2009

The panicking and noises could be an age thing. She seems to be very smart. It is really hard to determine since I am not familiar with your daughter. I am not sure how doctors determine at such a young age. It is a good thing that she get diagnosed, if she has autism, early so more help would be accessible to her. Hang in there and don't give up hope if she is diagnosed with something.

Melissa - posted on 08/04/2009

Alot of the things you describe can be symptoms of the autism spectrum. Since your daughter speaks and is smart try not to fear the actual diagnosis. It is only a label and it does not change who she is. It took me 2 years to finally be at peace with that. What ever she has her symptoms can be helped with therapy or meds or diet. I think getting her diagnosed correctly will put you in the right step to getting her proper help and therapy. Chance are she will continue to do fine and it will only help you learn how to help her. With some really good therapies she will probable grow up to be a little girl who is a "little different" and not the girl with "autism." Getting a diagnosis now will also help her qualify for things and programs later in life that she may one day need. In our state children can recieve free therapy service at home.(birth till the day they turn 4) Your doctor can refer you to your school's infant toddler program or early steps. They provide free services at your home such as an occupational therapist, a speech therapist, a teacher. Depending on funding in your state it may be once a week, twice a month. etc.. Any way I think this is a really good step to take, most Dr arent that proactive. Please keep telling yourself that it doesnt matter the diagnosis, her symptoms can be helped and this will be the first step in making sure her life is the best it can be. Good Luck and God Bless