Messages posted by: Connie (IAN Staff)

RAJ, thanks so much for providing the information about research into environmental factors and a potential link to genetic changes that may cause autism. The benzene study is especially interesting!

For anyone interested in learning more about environmental factors and autism, see:

http://www.iancommunity.org/cs/understanding_research/environmental_aspects

Hi Corley, hoopla, KET, and SPEECH PATH. Welcome to the IAN Community discussion forum!

I wanted to thank you for sharing your stories about struggling with aggression in children with ASD. It is clear this is a major challenge for many families and, as KET said, it is validating for families to hear that the research finally being done on this dovetails with their experiences.

The study found that 68% of children with ASD had been, at some point, aggressive towards caregivers, and that 56% currently were. That means that this behavior, however unpleasant, can be thought of as part of ASD, and not as some unusual co-occurring condition. Hopefully, that will help families fighting for services or intervention to address aggressive behaviors.

Thanks so much for letting me know about the broken link, bssage.

I think I've fixed it above. I'll also put it here.

Living with Autism: Puberty and Children on the Autism Spectrum -- http://support.autism-society.org/site/DocServer/LWA_Puberty.pdf?docID=4182

I also found news of a new book about puberty written for girls with intellectual disability, "The Girls' Guide to Growing Up: Choices & Changes in the Tween Years":

http://www.autism-society.org/news/new-book-guides-girls-through.html

Another book, available on Amazon, is "Taking Care of Myself: A Hygiene, Puberty and Personal Curriculum for Young People with Autism": http://www.amazon.com/Taking-Care-Myself-Personal-Curriculum/dp/1885477945

I hope these materials will be helpful for you and your family.

Hi Taylorsmom. Thank you for the updated links and other information.

Just a note regarding my use of the word "hypothesis." I know when we apply that word to an idea, it may sound like we're saying it's not that strong, but we actually don't mean that at all. "Hypothesis" is a very neutral word, that means "an idea based on our observations that is still being tested." In science, "theory" is reserved for phenomena with massive amounts of evidence behind them. Think of "Theory of Relativity" or "Theory of Gravity." In common speech, "theory" can mean "my idea of what's going on," but scientists use it very differently. I myself have made mistakes on the website, like when I wrote an article entitled "Extreme Male Brain Theory" -- that should have been "hypothesis," and not "theory." So - when I call an idea of interest a "hypothesis," I am not insinuating that it has no merit, but that it is still being being tested.

Thanks, Taylorsmom, for sharing the information about the documentary.

Just a word to our readers: the idea of a gut-brain connection in autism is only one of a number of hypotheses about the causes of autism. It's an intriguing one, and merits more investigation. The notion of a "leaky gut" is tied to many treatment decisions, and many families are using the Gluten Free Casein Free diet and other dietary interventions based on it.

You should be aware that it is only one of many hypotheses about the cause of autism, however. There is still debate about how many children with ASD actually have gastrointestinal or digestive problems, and what behaviors these may be linked with. See, for example:

http://www.ncbi.nlm.nih.gov/pubmed/22012246
http://www.ncbi.nlm.nih.gov/pubmed/21555957
http://www.ncbi.nlm.nih.gov/pubmed/12846385

Note the second study does say that, for families with more than one child on the spectrum ("multiplex" families), increased ASD severity does seem to be associated with increased GI problems.

Note also that the various studies come up with very different numbers for the percentage of children with ASD who have GI issues, so we're a long way from a definitive number on that, although you can see from these studies that researchers are actively investigating this topic.

I'm so sorry to hear what a rough night that was. As I posted elsewhere - sometimes families need professional help to assess the "meltdown" situation and work towards reducing the frequency and intensity of these distressing episodes.

You might be interested in this article: http://www.iancommunity.org/cs/therapies_treatments/child_psychiatry_and_autism

In it, the author recommends considering getting some help when you see:

1. An increase in the child's episodes of loss of control
2. Appearance of physical aggression toward self or others
3. Verbal escalation that evolves into uncontrollable screaming
4. Prolonged verbal and physical rages
5. Fear is another primary motivating factor. Are you fearful of the child and his or her behavior with siblings? Is the hair on the back of your neck standing on end when the child's behavior escalates? Do you ever wonder how long you can go on living like this?

Hi my2hbos. It sounds like this is such a stressful and difficult situation. As you can see from the posts above, constant meltdowns are very common in children with ASD, especially when they haven't had any intervention yet. So... there is hope! Your son has only recently been diagnosed, so there are so many things that can help.

See my reply to Kitana2, a couple of posts above, for some resources and tips. In addition to all I said there, keep in mind that it's tough at first because there is so much to deal with. You need a therapist or other professional who can help you prioritize: what needs to get done first, as far as intervention? What is fueling these meltdowns?

As each child with ASD is so different, someone with knowledge of ASD needs to help you figure this out. Is his insistence on having you close due to anxiety? Insistence on sameness (an autistic trait)? Old fashioned attachment issues? The answer to questions like these will impact the approach to working on the issue.

With older children, especially if they are intellectually high functioning, more approaches are possible, including cognitive behavioral therapy (CBT). That has been used often with older, higher-functioning children. Sometimes, medication can also come into it, if the child is too out of control to benefit from other therapies until they come a little bit more back into balance. (Again, see my post, above.)

Another factor that may be coming into play: school! Once an appropriate education plan is in place, as you go through the Individual Education Program (IEP) planning process, which is your right under the special education law (IDEA) - your son's school day may improve, and that may have an effect on how he's doing overall.

To find local professionals who can help, you might consult your pediatrician or the psychologist who diagnosed your son. You might also contact the Autism Speaks' Autism Response Team: familyservices@autismspeaks.org or 888-288-4762. They have extensive lists of resources, including professionals and treatment programs throughout the U.S. Also - check out the Autism Speaks' tool kits, especially:

The First 100 Days Kit: http://www.autismspeaks.org/family-services/tool-kits/100-day-kit

A guide to the IEP process can be found on this page: http://www.autismspeaks.org/family-services/community-connections/back-to-school

(Learning your rights under the law and advocating to get the best program you can for your son at school is so important. This info should help.)

Hope the meltdown is over soon...and peace is restored. I know it can be totally exhausting.

Welcome again to the site!

Hi my2hbos, and welcome to the IAN Community Discussion Forum.

Many siblings of children with an autism spectrum disorder (ASD) struggle to make sense of it. Many go through the same things your daughter is experiencing, including jealousy over the attention the affected child seems to get and frustration or hurt when their brother or sister doesn't respond to them as they hope they will. There are "Sibshops" around the country -- support groups just for siblings of children with special needs that help them understand they are not alone in their struggles: http://www.siblingsupport.org/about/copy_of_index_html

They have just started a program specifically for teens, as well: http://www.siblingsupport.org/about/connect/sibteen-facebook-group-and-yahoogroup

Education is part of the solution because it will help your daughter understand that her sibling has a brain that is wired differently. Often, once a person learns that someone with autism has their own way of being, and that you have to connect with them on their own, unique terms...a very warm relationship can develop. (Actually, it's kind of the same thing that parents learn when they have children with ASD - "Floor Time," for example, involves learning to follow the child's lead, enter their world, and connect -- a major aspect of intervention for any child with ASD.)

To help your daughter, you might download the Autism Speaks' "A Sibling's Guide to Autism": http://www.autismspeaks.org/family-services/family-support-tool-kits#siblings

Another suggestion: get the HBO "Temple Grandin" movie and watch it with your daughter. (Temple Grandin was the first person with ASD to give voice to what it's like to have ASD. The movie does a beautiful job of bringing the viewer into Temple's world.)

I hope this information proves helpful, and wish you and your family all the best.

Hi my2hbos, and thank you for sharing your story. It is so frustrating how long it took for you to get a diagnosis even when you had been telling people for years about your suspicions. This happens far too often, as you can see by our IAN data: higher functioning children are diagnosed much, much later: http://www.iancommunity.org/cs/ian_research_reports/ian_research_report_13

Parents often say they shared their fears and were dismissed instead of being taken seriously.

Because of this, the American Academy of Pediatrics has urged pediatricians to always take a parent's concerns seriously, and to err on the side of "let's find out what's going on" instead of saying "he's a boy, don't worry, they develop more slowly" and the other things they habitually said in the past.

Thank you for your post, Anonymous, and for sharing your story with us.

There are actually many people who have some autistic traits without having enough to qualify for a diagnosis, and there are also many higher functioning individuals who do qualify but go many years without a diagnosis because their strengths mask their weaknesses. See our article on the very late diagnosis of Asperger's syndrome: http://www.iancommunity.org/cs/articles/very_late_diagnosis_of_asperger_syndrome

If you and your son are interested in seeking a diagnosis, it is important to find a professional who is knowledgeable about autism spectrum disorders in those who are older and higher functioning. The Autism Speaks' Autism Response Team has listings of those who diagnose in various regions of the country: 888-288-4762 or familyservices@autismspeaks.org

The Global Regional Asperger Syndrome Partnership (GRASP) also has some information about getting a diagnosis, as well as resources for adults on the spectrum: http://www.grasp.org

As for being depressed during pregnancy, I know of no research that suggests simply being depressed during pregnancy is associated with autism. Some have questioned whether taking certain antidepressants during pregnancy is associated, but that is still an open question. There is also some research that shows, in genetic terms, some families have both ASDs and mood disorders in various family members, but that does not mean one causes the other. You might be interested in a report we did based on the results of our Parental Depression History Questionnaire: http://www.iancommunity.org/cs/ian_research_reports/ian_research_report_oct_2008

Hi shejohns, and welcome to IAN Community.

I'm so sorry to hear that your son and family are struggling with the aggression issue. As you can see from the research project just done, this is a common issue for families of children with ASD, and it's a difficult one to cope with.

A couple of interventions commonly used to deal with this are cognitive-behavioral therapy and/or medication. Cognitive behavioral therapy would include things like teaching anger and frustration management (if the child is old enough and self-aware enough to benefit); purely behavioral techniques might also be used, where the goal is to replace the negative behavior with a more positive one. Either way, you need a skilled therapist familiar with both purely behavioral and cognitive-behavioral techniques.

Medication is often used when a child is simply too "irritable" or on edge to be able to prevent his/her own meltdown without some help. In this case, you think less in terms of the behavior serving a function (like getting attention or escaping an undesirable task) and more in terms of neurochemistry that is "off." The only two FDA-approved meds for children with ASD (Abilify and Risperdal) are actually intended to help with this type of behavior and the unstable moods that may lead to it. See our IAN Research Report on medications: http://www.iancommunity.org/cs/ian_research_reports/treatment_series_medication

Of course, these are only two approaches (often used together). There are more, but this illustrates some of the treatment options that families try.

I hope the situation improves for your family soon!

Thanks so much for your post, shejohns. Getting Lola trained sounds promising, considering her parentage! Let us know how this turns out.

Hi lwheele, and welcome to IAN Community.

I just wanted to say that often it is really helpful to contact the local chapter of the Autism Society when you are thinking about moving to a new place. See if they can put you in touch with some Alaskan parents who are in-the-know about the situation not just in Alaska, but in the specific school district you think you might end up in. Alternately, they might have suggestions about which school district or area is best for kids with ASD as far as services/support. See: http://www.autism-society.org/get-involved/state-resources/alaska.html

Another source of great information across the nation is the Autism Speaks' Autism Response Team. They may have some idea of local advocates who might be knowledgeable: 888-288-4762 or familyservices@autismspeaks.org.

Hi luvinmyaspie.

I so understand your frustration. Because autism spectrum diagnoses are based on behavior, and not a blood test or brain scan or anything like that, there is often disagreement between professionals. You are doing the right thing: documenting what you see, and communicating it.

I know many parents have to take their child to several professionals before they find one who "gets" it. It is important to make sure, especially for a high functioning child, that they are truly expert in ASD and can recognize the disability that is obscured somewhat by the intelligence, large vocabulary, and other gifts of some high functioning children.