Messages posted by: Connie (IAN Staff)

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.

New research shows that children with autism spectrum disorders often display aggression: kicking, hitting, biting, throwing objects, etc. This behavior can cause incredible stress for family members, and further isolate a child and family in the community. What has your experience been? Are there solutions you have tried that have helped a child decrease aggressive behaviors?

Hi bssage. I am so glad to hear of your ongoing success with the door alarms, but the behavior in the parking lot sounds like quite a challenge.

We have put out our first preliminary family-friendly report on elopement based on our Elopement survey and are now preparing a scientific paper that will begin to describe and document the issue in a more formal way -- and a way that advocates can use when they need to show evidence of this phenomenon.

The family-friendly preliminary report is here: http://www.iancommunity.org/cs/ian_research_reports/ian_research_report_elopement

Thank you so much for sharing your thoughts, Sergei. It is clear that you are a very good advocate for your child.

Sergei, thank you so much for your post. I am so sorry to hear that you have the same difficulties in Russia with bullying. It is so terrible that children who are already different, and have to try so hard to succeed at school, are then tormented in this way. How can they learn in such an environment? And how can they become able to interact socially when other children are being cruel?

Taylorsmom, thank you for sharing news about this candidate treatment for increasing language ability in individuals with ASDs. With such intriguing preliminary results, I am sure other researchers will try to replicate (that is, repeat and double check) the study on a larger scale.

Another possibility I hope to see further explored is the use of oxytocin nasal spray which, in very small studies so far, has seemed to improve social functioning in people with ASDs. It is actually pretty rare to find a treatment that gets at that core aspect of autism! See, for example:

http://abcnews.go.com/Health/AutismNews/love-hormone-oxytocin-shows-promise-autism/story?id=9843745

http://www.ncbi.nlm.nih.gov/pubmed/20160081

Again, much larger scale studies are needed to ensure that this treatment is truly safe and effective.

Very interesting! I'm so glad Dr. Klin provided that additional information to help explain. I didn't realize myself that the age was so crucial.

Ben, that is fascinating. I hadn't heard of that particular ability in individuals with ASDs, and you're right. If they can easily take in and process things "forwards and backwards," the conclusions of the study would need to be questioned, or explored further.

RAJ - please let me know what your specific criticisms are and I can ask the research team about them.

Sue, your point about autism subtypes is very timely. Identifying true "types" of autism, instead of lumping what are probably a variety of ASD-like conditions into one pot, will be the key to making real progress in terms of understanding cause, heritability, and ideal treatments. If we are currently mixing apples, oranges, and kiwi fruit (so to speak) in different proportions in every study we do... Well, confusing and contradictory outcomes are going to be a problem.

There was just an announcement at a major autism conference regarding the first biologically distinct subtypes of brain development in autism: http://www.medicalnewstoday.com/articles/234411.php

They liken where we are in autism now to where cancer researchers were decades ago, when cancer was just an inexplicable process and that word was applied to its thousands of permutations. It was getting a handle on those specific permutations (i.e. subtypes) that led to effective treatments.