Questions for Dr. Paul Law

Hello Sharon, and welcome back.

Looking at use of one-on-one aides by state is a terrific idea, and I will suggest to my team that we include such an analysis in our next Research Report. (We haven't looked at this yet, but it should prove interesting.)

As for your questions about mothers and depression, we still don't know if depression runs in these families or is mostly situational, coming only after a child's ASD. A Maternal Depression Questionnaire is in development, and will help us to determine when mothers experienced their first episode of depression --after the birth of their child with an ASD or years before.

Dr Law,

Do you plan on having studies done with the 18+ crowd? I cannot participate in your studies now that my daughter has hit 18.

I would love to complete questionaires for her or see if I can have her do it for you.

Thank you

Caro, hi. Yes, we are going to be including individuals age 18 and over in IAN. We are working on an Adult with Autism Spectrum Disorder version of IAN. It's a complex task, partly for legal reasons such as some adults with ASD are under guardianship and some are not, which means we need two separate consent processes. ("Consent" is when you give your permission to be included in a research study.)

In any case, we have heard from many, many people --adults with ASD and their parents and other supporters-- that adults want to be included in IAN, and we are working on it.

Make sure to subscribe to the IAN Community e-newsletter, if you haven't already, because we'll certainly announce the Adult version of IAN there once it's all set. We're hoping to have it ready sometime in 2008.

Dr. Law,

I have registered my family with IAN and find many of the topics interesting and am encouraged by the ongoing research. Both my children are adopted and not biologically related to one another. As many of the research topics relate to potential genetic predispositions or correlations, I hesitate to participate for fear of skewing data.

Are you aware of any ongoing research where the absence of genetic links between family members would be a benefit?

Regards,

Eric

Hi Eric R.

To answer your question, it is fine for adoptive parents to answer all the questions in IAN. Researchers analyzing our data will be able to tell which parents are adoptive and which are biological, and separate those out depending on what they are studying. For example, if you have a hypothesis about something genetic, you need to note this difference; if you are studying family stress, you don't.

Actually, having information from adoptive parents can be very helpful as it offers another case - a case where people are in the same family and environment but don't share the same genes. That can be useful!

So I hope you will participate in IAN - we can definitely use your data, and will value it.

Being part of IAN is also a way to become notified of other studies, as we serve as an autism research recruitment registry. Genetics researchers might not contact you, but other researchers would.

Hi Dr. Law! I was wondering what study you are talking about when you refer to the mother having Pitocin? I had pre-mature rupture of membranes at 33 wks. was put on antibiotic's in case of infection and had my labor kicked in with pitocin after laying there 3 days. I also had been givin progesteron suppositories during pregnancy to sustain and carry my son. he ended up weighing 4pnds. 11 oz and needed no oxygen. The doctor's said he was fine and the twitching he did was due to prematurity. In march he was diagnosed with Autism and dev. delays and sensory processing disorder and etc. Is pitocin linked to Autism? Thank you

Hi blessedmom.

The hypothesis that the administration of pitocin during labor might be linked to autism in a child is fairly new. It has not been fully tested yet. See: http://www.ncbi.nlm.nih.gov/pubmed/15288368?dopt=abstract

One small study looked at this and found no evidence of an association between the use of pitocin and autism: http://www.ncbi.nlm.nih.gov/pubmed/12757361?dopt=abstract

(When you see the word "oxytocin" in these articles, keep in mind that pitocin is synthetic oxytocin. You can think of them as very similar things.)

We're working on a Pregnancy & Birth Questionnaire for IAN, and you can bet that we will include a question about induction of labor and the use of pitocin!

Thank you Dr. Law!

I would be very interested in taking the Questionnaire when it is ready. I think that in the end with everyone pulling together their stories and information of their children with Autism and etc. will eventually have a huge payoff. I just hope and pray it is sooner rather than later.

I just hope we can cure everyone of this idea that autism is a disease, myself.

I used to have severe issues with hygiene, socialization, self-injury, exclusion of anything not related to my current interests, and so forth.

I learned to deal with them and interact in a semi-normal manner, but just because I don't wear a diaper, pound my head on the floor, and can carry a decent conversation... doesn't mean I stopped being autistic.

Given the choice I'd much prefer to be filthy, rock in my chair, tap my feet while picking my nails, and babble endlessly about physics and mathematics... I learned to understand neurotypical people enough to see that they didn't "get" that part of me, and so I restrain it to various degrees.

I can not be cured of this, nor would I want to be, but I wish I had known what autism was when I was 6, and had educated adults to work with me back then, 23 years ago.

Hi Max. I often hear adults say exactly what you just said: If only people had understood about autism spectrum challenges when they were younger! Of course, there are still many people who don't "get" ASDs, but there are many more who do. I am thinking especially of certain teachers, therapists, and others who work with people with ASD and have gained a real sensitivity to the perspectives, challenges, and strengths of individuals on the spectrum.

So many "high functioning" people went through school completely unidentified, misunderstood, and unhelped. In fact, we hear a lot about bullying and other miseries these people who were only diagnosed in adulthood faced as children. I can only hope there are far fewer individuals with ASD waiting so long for help or acceptance now.

You might be interested in an article on the very late diagnosis of Asperger's syndrome that we have on our site: http://www.iancommunity.org/cs/articles/very_late_diagnosis_of_asperger_syndrome

Dear Dr. Paul;

I distinctly recall filling out a number of questions regarding immunization for both autistic and non-autistic family members. Then, having scoured your statistical results pages, I found zero indication as to the findings. I subsequently emailed several people at IAN to obtain the results of this portion of the study. I was, however, either redirected to the statistical page (where the data is absent, or at least, it was the last time I checked) or I was met with complete silence.

When will this data be released to the IAN Project participants? Why was it not included in your statistical findings to begin with?

Hi HappyFlappy. You are right! We hadn't posted the Vaccine Questionnaire in the Data Explorer and other stats functions of IAN Community yet. (We were going to wait until we were done collecting data, but we are done with that at this point.) I will have our technical person activate that today.

For our readers: If you'd like to explore the IAN Data by questionnaire -- which is flowing in from all the people around the U.S. answering our surveys -- go to the IAN Community home page and click on "Data Explorer" up at the top right.

My son was diagnosed with aspergers about two years ago. After we were told that is what he has we were finally able to put a name to what was going on with our son. He has always been just our dakota since he was old enough to walk. He has had the symptoms of aspergers his whole life. He was diagnosed as adha, anxiety disorder, ocd and to many more to mention. Finally aspergers. This one fits him. He goes to a mental health center that is state run. He is on his second Dr. The first one diagnosed him and now the second one he has seen twice now is telling me that aspergers being moved out as a diagnosis and he is no longer classifying him as such. He is now labled as haveing oppostional defiant disorder.I dont know what to do with that. He has no signs or symptoms of o.d.d. We are trying to find out what we should do. I feel like most of the reason that they changed his diagnosis is because I was told in the past that the center he goes doesnt treat aspergers. They have his diagnosis as o.d.d. listed first on his papers so he could be treated there and asperges as secondary. Should I agree to the o.d.d. or should I find somewhere else for him.

Hi danokenchey.

This sounds like a difficult situation with your son. Of course, I don't know you and your child, so I can't advise you here, but I can say this. The new edition of the Diagnostic and Statistical Manual (DSM) may remove Asperger's syndrome, but they intended to fold it in under a new, broader diagnosis called Autism Spectrum Disorders. My understanding is that the conditions we now call autism, PDD-NOS, or Asperger's will all be folded in together under the new Autism Spectrum Disorder. The people working on the new DSM say the reason for that is as follows:

1) A single spectrum better reflects the pathology and symptoms.

2) Separation of ASD from typical development is reliable and valid, while separation of disorders within the spectrum is variable and inconsistent.

3) Individuals with autism, PDD-NOS, and Asperger disorder often are diagnosed by severity, rather than unique, separate criteria defining the three diagnoses.

See the write-up at the end of our latest research report: http://www.iancommunity.org/cs/ian_research_reports/ian_research_report_13

The intent is not to take people with Asperger's and put them in other, non-ASD categories. Sometimes a person with an ASD also gets another diagnosis, like ADHD. Generally, they don't lose their ASD diagnosis altogether unless a mental health professional thinks they've made such incredible progress that they no longer qualify as having ASD, or perhaps believes that they were misdiagnosed and never had ASD.

If you feel uncomfortable with what any doctor or other expert is telling you, remember that it is OK to ask questions. You can ask how much experience the professional has working with high-functioning individuals on the autism spectrum. (Do they know Asperger's when they see it?) You can ask what the person is basing their diagnosis on, and explain what you have observed that makes you think an Asperger's diagnosis fits. It is also always OK to go and get a second opinion when you're not feeling confident in a professional's diagnosis, or even just when you want to be double-sure.

For some other thoughts about this issue, listen to "Removal of Asperger's to Change Special Ed Access" on National Public Radio: http://www.npr.org/templates/story/story.php?storyId=123577220