general discussion

I would like to see a "general discussion" topic. Sometimes I feel like this is the only place i can go to vent or voice my concerns about therapy's, news items, what we heard from a friend.

Everyone wants to sell a book, a program or something. I trust IAN to be unbiased and I think its the ideal forum for open discussion, venting, or sharing successes.

Please

Hi bssage.

Thank you so much for sharing your thoughts and positive feedback.

Based on your input, I have just created a "General Discussion" topic under our Autism Research forum. This will be a place to share ideas, ask questions, or express what's working or not working for a family with a child on the autism spectrum. (Of course, as we respond we'll keep the focus on research aspects since that's our mandate here at IAN.)

Thanks a lot. It just gets so frustrating at times. Chloe was making major improvements and in the last week she has lost ground on behavour issues. She is throwing more, hitting more, refuses to wear anything other than candy cane pajama pants and completely melts down. Arrgggggggggg. Hard on the whole family. And at times I feel like I am neglecting my 9 yr old boy because his sister requires so much more.

It will be nice to have a place to vent where people understand.

You're welcome, bssage.

Please do keep in mind that participants in the forum can't just vent here at IAN, because our mandate is to be research-focused and there are many other autism forums for pure venting. On the other hand, you definitely can "vent inside a research question," as people often do! In other words, the forum's mandate is to be research-focused, but people with research questions often are going through some very day-to-day struggles and talk about these in connection with their questions.

What you are going through is a perfect example. It is so distressing to have a child lose gains they have made, or to go through a discouraging period where they are having more behavior problems after things had seemed to be getting better. Research does show that children on the autism spectrum definitely have more behavior issues than children with other disabilities, and that their mothers suffer more stress as a result.

See, for example: http://www.ncbi.nlm.nih.gov.ezproxy.welch.jhmi.edu/pubmed/19936904

One thought that might help parents through such times is that these times aren't unexpected. They are likely to occur. Children with ASD do tend to have good and bad periods they go through. We talk about this in our article on evaluating treatments. See: http://www.iancommunity.org/cs/therapies_treatments/evaluating_treatments

In addition, as children grow and develop, they meet new challenges in their lives, and for whatever reason -- perhaps because people with ASD like routine and things to stay the same -- times of change can be rocky. Even more bewildering for everyone is when the change seems utterly random. More encouraging is the thought that if "bad" periods come around, so do "good" ones, and that even if a developmental phase is rocky, it will eventually be adapted to. I'm not thinking here just of adolescence, but also of the change from pre-school kid to bigger kid, or early elementary school (1st or 2nd grade) to late (4th or 5th grade), etc.

I hope families will share their own stories of how they coped through "bad" periods, what they felt was associated with this, or if they thought they were random. I know the sibling issue is also a huge concern for many parents, and there are research studies going on that look at how siblings are doing.

We finally found a developmental pediatrician who performed a complete work up on my eight year old virtually non verbal Autistic son. Some of the lab came back denied. My insurance company sent me the forms to appeal there denial but I have no experience in this ? has anyone else ran into this problem and how did you handle it?

Hi clanhorton, and welcome to IAN.

I am so sorry to hear that your lab work came back denied by insurance. I am not an expert, but I believe the first step to take is to follow the appeal process. If you have your insurance through work, there might be someone in Human Resources who is somewhat knowledgeable about the process.

If you follow the appeals process (which is often lengthy and frustrating, I'm afraid) and still have no resolution, see if your state has an insurance commissioner who accepts complaints. Also, check with your local autism or disability advocacy organizations to see if people with the same kind of insurance ran into the same issues and how these were resolved. You might want to check out your local chapter of the Autism Society for America, for example. See: http://www.autism-society.org/site/PageServer?pagename=community_chapters

There is a program for parents who are battling school systems for services: http://www.autismspeaks.org/press/federal_legal_appeal.php But I do not know of something similar for fighting insurance appeal issues. If anyone does, please post here!

Just joined here. Looking for other parents with asperger kids. I am the only person I know that has a kid with aspergers. I have had problems with the school for years and now that they know what is wrong with him when he gets into some trouble at school they say they dont believe it is due to his "problem". Well if they did any kind of research on aspergers they would know what they are dealing with. I have had more than my share of come and get him from school calls. My favorite and most recent would be a few months back he didnt tuck in his shirt so by eight fifteen i was called to remove him from school. He wears uniforms and on this day he had put on the wrong pants and to tuck in his shirt was painful for him. He is very sensitive to the feeling of clothes so to him he was in pain. So instead of letting it slide one day they wanted him to leave the building. That is just a mild situation. He has left campus and walked two blocks, while being followed by the principle and vice princ. and also special ed teacher. I am just sick and tired of people thinking because they cant see his disability that he doesnt have one. Yes he is getting good grades and really smart but he is differnt. I wish I could get them to see that. I guess iam just tired of telling people over and over and over how he is and how to deal with him. Sorry to write a novel but just need someone or somewhere to vent things to. Thanks to whoever took the time to read. Again sorry about the novel.

Welcome to IAN, danokenchey.

I think if you read through our forums here, you will definitely see that there are so many families going through this same issue: other people's refusal to acknowledge or accommodate an "invisible" disability.

The thing is, high functioning autism or Asperger's is not really invisible, not if you know what you're looking at. It is a lack of training or experience that leads people to be so blind, perhaps combined with an institutional desire NOT to see. (If you acknowledge a disability, then you have to provide accommodations under the law - something a school may not look forward to having to do.)

Still, the law is there to protect individuals with disabilities. The Individuals with Disabilities Education Act (IDEA) protects students with special needs, including autism. One thing I often recommend is learn about the law, so that you can speak it's language when dealing with the school. Another thing, especially in a school that denies the disability, is to come in with an evaluation/diagnosis from a respected professional outside the school system. A third tactic: when you do call an Individualized Education Plan (IEP) meeting with the school, bring an advocate with you - someone who knows the law and can support your side.

In brief: have the piece of paper that says your son has an autism spectrum disorder; call the IEP (now under the protection of the law); and bring an advocate, or at least another parent, to support your point of view at the meeting. Often, it is helpful to speak with other local parents who have been through the same issue. For example, you might want to contact your local chapter of the Autism Society of America: http://www.autism-society.org/site/PageServer?pagename=community_chapters

They may be able to help you identify a professional knowledgeable about Asperger's who could evaluate your son; provide information about the law (IDEA and IEPs); and recommend an advocate who, for a fee, would attend the IEP with you.

For some information about the law governing children with disabilities, see the resources at the end of our Back to School 2009 report: http://www.iancommunity.org/cs/ian_research_reports/back_to_school_2009

clanhorton wrote:

We finally found a developmental pediatrician who performed a complete work up on my eight year old virtually non verbal Autistic son. Some of the lab came back denied. My insurance company sent me the forms to appeal there denial but I have no experience in this ? has anyone else ran into this problem and how did you handle it?

We ran into the same thing. Hopefully with the current insurance legislation being past in many states this practice will stop. We had to get Chloe reevaluated with a diagnoses of mildly retarded to get the medical assistance we needed. Its a bummer but was the only way without paying the entire medical bills out of pocket.

Hello all. It is so wonderful to find this sight. I think when you have a child with ASD, isolation is something the whole family goes through. It is nice to find a place to go where you can get answers and find others who understand.

I am wondering if anyone here can relate to this. I am the mother of a beautiful 4 year old boy who was recently diagnosed with asd. He is very high functioning and unless you live in our house, you might not see that there is anything going on. His brother and I live with it 24/7 so we definately do! I have been told by friends and family that he is just spoiled and throwing temper tantrums, that I am just not good at parenting, that ASD is just media hype and an excuse to drug your kids, etc., etc, etc. As you might imagine, I am getting just a bit angry.I have a 13 year old who is "NORMAL". He is sweet, well mannered, smart and caring. He really doesn't have any behavioral issues outside of the fact that he's a teenager! My youngest is also sweet, caring, smart and well mannered. But put him in a room with too much noise, people, smells, lights, etc, and he becomes a different person.

We do not get invited over to friends's houses or family get-togethers because they feel that I can't discipline him properly. There is no understanding despite my efforts to educate them on the many ways that ASD can manifest.His own Grandmother and father have little to do with him,and consequently his brother and I.

There have been moments where I wish he had the classic symptoms so that maybe people would understand. Doctors would stop giving me the run-around. Insurance companies would cover treatment. And then I feel horrible for thinking that. But they all saw Rainman and figure that is autism and he just doesn't fit the profile. My friends and family walked away when we needed them the most.

Does anyone else out there go through this? I know that the most important thing is that I am there for him and I am doing everything I can to understand and help him. But I just feel so alone sometimes.

Hi myangeldevin, and welcome to IAN.

I think you will find so many parents have had this experience. I have heard this again and again, both from parents participating in the IAN Research project, and grandparents who participated in our "Grandparents Survey": a lack of understanding from family members, neighbors, and even just strangers can be so isolating and painful. The less obvious a disability, the more parents suffer blame and condemnation for their child's disability-related behavior. That makes what is already an isolating and difficult situation even worse.

I hope our reports on these topics will show you that you are not alone. We've included comments from people who had this exact same experience in these articles:

Our 3 part "Family Stress" series, starting here, with Part 1: http://www.iancommunity.org/cs/ian_research_reports/ian_research_report_april_2009

Our 2 part "Grandparent" series, starting here with Part 1: http://www.iancommunity.org/cs/ian_research_reports/ian_research_report_apr_2010

You may find that you need the support of other parents going through the same things. If you think you might benefit from a support group, or just contact with other parents in the same boat, contact:

Autism Speaks' Autism Response Team: 888-288-4762

Autism Society of America local chapter: http://www.autism-society.org/site/PageServer?pagename=community_chapters