New Aspergers diagnosis, but does it fit?

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I am hoping for input from parents of kids with high functioning Aspergers. My knowledge is so limited. I understand what some of the symptoms of Autism are, and thought my child could not have it because she does not display certain symptoms. Looks I was probably wrong, but its still nagging at my, making the diagnosis hard to accept.

I know its a lot, but can anyone check out the list below and tell me if their Aspergers kids are similar or if they know of people with Aspergers who are similar?

My child does:
demonstrate affectionate/cuddles
build relationships and make friends (though can be hard on them for perceived mistakes)
pick up on most social cues
show empathy
have major meltdowns that are not in proportion to the trigger (usually dissapointment or frustration)
occasionally hyperfocus at innapropriate times
drift off in school or at homework time--major focus issues causing poor grades
have really poor handwriting and difficulty in writing assignments
have excellent reading skills and easily learns spelling
improve focus somewhat by ADD stimulant meds, but not completely
repeat certain negative behaviors in the same way regardless of the severtiy of consequence
(did) walk on her tiptoes when she was learning to walk
have sensivty to loud noice

My child does not:
spin or spin objects
avoid eye contact
have clothing sensitivity
self stiumate with waving hands, hitting self, rocking, etc.
respond well to changes in routine that are perceived as negative (usually ends in meltdown)
do well in crowds and is very hesitant with new people
always connect consequences to actions--can be impulsive when it comes to present desires


I mean this- thank you for any input. Right now I don't know which way is up with this and what to do for my daughter.

Asperger's is milder than Classic Autism. Your child does have some Aspie traits. It is not necessary to have all of the traits to be on the Autism/Asperger's spectrum. Good news! Your kid seems to have a lot less traits than I do. Also it has been diagnosed at a young age in your kid's case. When caught in childhood, the kid is more likely to be helped by treatment and therapy programs. I am in my early 50s and only learned about Asperger's about 8 years ago. It took several years for me to self diagnose. They don't have a lot of treatment programs for older adults. I am not seeking a formal diagnosis, as that is more for people who are in doubt or who are seeking help through gov funded or insurance paid programs. I am on Disability for other health issues, so I don't need the work assist programs, I am too old for the kid and school programs, and I am an introverted hermit, so I am not interested in the social programs. I also have a strong aversion to psych docs and therapists due to having been taken to far too many of them as a child. Back then Autism disorders were not recognized as such. We were diagnosed with emotional/behavior problems and/or as discipline problems. I hated all the doc and therapy visits. Because they were mistaken in what my problems were, they were not using the right treatment methods, so they didn't help me, and just made me feel worse about myself. I am not interested in seeing any more psych docs or therapists for a diagnosis that won't help me in any way. I got enough help in my own research on the subject, and have no doubts that I have Asperger's Syndrome. I fit the trait profile too well to be other wise. At least it was a great relief to me to finally know what is wrong with me.

In your child's case there are now things that can be done to help him/her, so there is help for your kid that wasn't available when I was growing up. Good luck!

There is definitely a range so it just depends on the severity of the things that meet the criteria.

It is easier to think of it, sometimes in terms of the categories they list in the DSM.

Social :

Communication (Social and communication can be lumped together, depending, as some of the social issues are because of communication issues.)

Rigidity - This includes special interests, stubborness about how things are done,

A lot of the other things on the checklists correlate, but are not central to the diagnosis, and everyone on the spectrum is an individual just as anyone else would be. Generally there will be some issues with sensory issues like noises etc, as well as other things.

When you got the diagnosis for your child did they describe how your child does in these categories? What kind of tests/questionnaires did they use for the assessment?

My son is the snuggliest little man you ever would want to meet, but is VERY low on the social parts of the testing. He is verbal, but has issues with pragmatic (social) speech up the wazoo. He has a horrid time with transitions and stims but his stims are not necessarily obvioulsly stims unless you know a lot about stimming.

How old is your child? How much do you trust the medico who gave you the diagnosis?

Your lists do contain some characteristics that are consistent with an autism or Asperger's syndrome diagnosis. However, in young children it can be really hard to tell the difference between slightly slower than normal development and a diagnosable condition. I think accepting the diagnosis is hard for most everyone, including those whose children clearly display many characteristics and those whose characteristics seem less pronounced. I encourage you to learn more. There is a stickie at the top of this thread for suggested reading materials. There is a lot of good info there to point you in the right direction. I personally started to feel better about the diagnosis once I started reading and educating myself about my son's autism. I have heard others say the same. It is really easy to be scared about something you don't understand, that is human nature.

My son sounds similar to your daughter in some ways. He has a lot of the same academic strengths/weaknesses. (Phenomenal vocabulary/spelling, completely illegible handwriting...) He is also able to make and keep friends, though he has not that many, and there are misunderstandings at times. He rarely or never "stimmed" at home (but school, and the neuropsych, both reported this behavior - he is not stressed around me as much as around a roomful of noisy and unpredictable classmates). He has attention issues (inability to focus on homework, also, strong tendency to be distracted by his own new thoughts/ideas rather than what he is "supposed" to be doing...) but has never been on drugs for ADHD and does not have that diagnosis. (In some ways, I am glad, the AS interventions at school seem more purposeful than just giving him a pill...) He was diagnosed with AS a few years ago, and at the time I had a lot of trouble accepting the diagnosis, because I wondered how it was possible that I, his parent, and a fairly involved parent who was able to keep him at home in his early childhood, never noticed something was wrong until school started to tell me about problems.

Two things helped me. One was the developmental psychologist who was part of the team that made the DX. I confronted her with my doubts, and she pointed out to me that with my past experiences (many years of college and graduate study in the sciences, and continuing ties to academia) I had doubtless met my fair share of high-functioning Aspies like my son. It's less about what is "wrong" (the usual way one thinks of a medical diagnosis) and more about how my son learns, what things are especially challenging to him, and what things are special strengths.

The second was to go out and read a couple of books on parenting children with Asperger's. It's not that the particular book I picked up was brilliant (I no longer even recall which book it was). It was more, as I read, that I started to realize that a lot of the things I was doing with my son in terms of making daily life work, ways of redirecting him, warning him of changes to his schedule, avoiding situations that were overwhelming for him, etc. were "tricks and tips" these books recommended. I had simply stumbled into them because they "worked".

I am so grateful to all who have answered my thread. Thank you.

My daughter is 11. We have known something was "off" since she was about three. We had an agency come in and a volunteer observed her, suggesting she may have sensory inegration disorder. When I took this to our pediatrition, she told us this was not considered a diagnosis insurance would cover, and really had no treatment. This was before we had internet and we really didn't understand what it would mean in the long term, so we let it drop. We just knew her meltdowns were not normal tantrums and tried to adapt.

Problems progressed as she got into school and would stare vacantly at her math paper as the other kids were working. The next few years in grew worse. We did SST's (where the principal met with the teacher and I to review what best suited her edu needs). I tried in vain for years to express to them how it was not just at school, but innatention at home, severe meltdowns, etc affected her, and to ask for help. The principal put it down to willfulness. Finally after being an A and B student (with a herculean effort an all parts, especially in math) she flunked math and was barely able to bring up C's in everything else last quarter. I never knew we could have an eval done until a few months ago, when the family doc referred us to a Pshychiatrist. We had been under the impression it was solely ADD Innatentive for the last year and a half and have done the gammut of stimulant meds with mixed reuslts, none lasting.

The Psychiatrist/Phsychologist team we have been seeing seems to be well respected in this area and I am hoping they are good. We are in Oklahoma (we're fairly new here) and don't know much about anyone unfortunately.

The testing the Pshchologist did was over three visits and included an ADD eval, an IQ test and an Autism eval. I have no idea what brand of tests were used in particular. I am sure it will be in the report that is not yet complete--if not I will be sure to ask.

Arithmancer, its comforting to hear that some other kids display some of the same symptoms without some of the classic- more expected ones that my daughter does not display. It is really frustrating. So far I have had two family memebers disbelieve the diagnosis because they don't see the symtoms they expect with autism like difficulty with affection, making eye contact, spinning, etc. Everyone just thinks she doesn't want to do her work and that she can be a colossal brat when she doesn't get her way. How do you explain it so they understand?

I guess I have to make it clear that I am not reeling because my daughter now has a diagnosis that includes autism. Its that I feel lost and don't know how to help. She is no different a person than she was yesterday, we just now have a new tool to help her. I just have to learn how to use it, and how to help others like teachers, family, and friends understand her, and it's a daunting task. I will definately do my homework and read up on Aspergers and Autism so I have a better knowledge base to work from--thanks for the advice.

my son has aspergers and is the most affectionate person you will know! He makes beautiful eye contact and doesnt spin things, doesnt flap his hands, etc...

It can be hard, and I think it has to do with stereotypical beliefs about autism and aspergers, but it is a spectrum, and some of our kids are on the less effected end.

Hang in there and do lots of reading! That helped me the most...

The following books might be helpful in figuring out which traits your daughter has and which she does not, and how to help her. The first in particular talks about different AS "subtypes", and I find that the "primarily ADHD" subtype fits my son who doesn't have many of the stereotypical traits like an obsessive special interest, rigid rules, or being a little professor. You should also look for a good book on AS in girls, since it often presents very differently.

Parenting Your Asperger Child by Alan Sohn, Cathy Grayson

The Complete Guide to Asperger's Syndrome [Paperback] by Tony Attwood (Author)

The OASIS Guide to Asperger Syndrome: Completely Revised and Updated: Advice, Support, Insight, and Inspiration [Hardcover] by Patricia Romanowski Bashe (Author), Barbara L. Kirby (Author), et all


I also highly recommend these books:
Parenting Children with ADHD: 10 Lessons That Medicine Cannot Teach by Vincent J. Monastra

Smart but Scattered: The Revolutionary "Executive Skills" Approach by Peg Dawson, Richard Guarer

Parenting Your Asperger Child by Alan Sohn, Cathy Grayson

Wrightslaw: From Emotions to Advocacy: The Special Education Survival Guide by Peter Wright, Pamela Wright

This cartoon might be good for the relatives:

Dude I'm an Aspie (kids edition)

I have to know... Did you kidnap my son, because you described him to a TEE!. He is 11 and diagnosed with PDD-NOS, anxiety, and ADHD predominantly hyperactive. He does have some significant problems interacting socially and making friends though. This did not really start to become an issue until about the middle of 4th grade.

Welcome

Thanks all for responding I will definitely check out those books. Its good to have somewhere to start--there are so many to choose from.

Eureka-c--no kidnapping here Its good to know my girl isn't alone in this, though I wish this were not true for any of them. Katie has friends but its hard to get across to her that she has to go easy on them when she perceives something they do as offensive or hurtful--she'll get cross and complain about it. She often loses potential friends that way and has a hard time making new ones. She usually keeps friendships with kids who are naturally easier to forgive and not easily offended. She'll play in a group just fine if someone makes any effort to include her, but she fears rejection too much to approach new kids on her own. It s hard to see them struggle socially when you know you have such a great kid.

Keep in mind one thing.

You don't have to have every symptom on the list to have the condition. Everyone is different.

jewelergirl, I think you are doing a really good job following your DD's cues. Getting a diagnosis, in some ways, makes it easier for others to know how to relate to your daughter, not so much you and your family, who simply know your daughter as, well...your daughter! The adage: When you know one child with autism, you know *one* child with autism, definitely holds true for most kids on the spectrum. The resources suggested will really help you ease some of the stress it sounds like your DD may sometimes have. My DD sounds very much like yours and she was diagnosed PDD-NOS at 4 and more recently Asperger's with ADHD-PI (predominately inattentive). The ages between 8-9 (or third grade on) are harder for our kids because school requires much more working memory and executive function control than grades K-2. For kids who were treading water okay in those early school years, 3rd/4th/5th may seem like they are barely staying above water!

It would probably be a good idea to share the resources you find with family members. One easy to read book was the Ten Things Every Child with Autism Wishes You Knew, by Ellen Notbohm. I think it's in the parent resources sticky too, but it's easy to read, and if family members don't want to read the whole book, they can skip chapter to chapter (each chapter is one "thing") and read the first paragraph. I had to share this book with some friends. With family members and friends, if their knowledge of autism is limited to "Rain Man" and what they see in the media, those people may only relate to your child through those terms. Having a support system in place is not only important for your daughter but also for you! Books that teach trying to understand what someone on the spectrum may be going through are so important.

Great suggestion on that book-- I will go look for that tonight. Yes, things started getting more difficult after 3rd grade, but 5th was an uphill climb. I am so hoping that having this daignosis will help us in getting an IEP in place and help teachers unserstand how to work with and not against her. Middle school in the fall with 7 teachers. Fingers and toes crossed! Thanks all!