Aspies For Freedom

http://www.sciencedaily.com/releases/200...100809.htm

Autism: Why Do Some Develop Then Regress?

ANN ARBOR, Mich -- Most children with autism show developmental differences early in life, usually involving their ability to communicate. But new University of Michigan research examines the 20 to 40 percent of youngsters who appear to develop communication skills, then regress.

The largest known study of its kind offers a host of new details on autism with regression, including a link between regression and a family history of autoimmune thyroid disease, an association with gastrointestinal symptoms and more findings offering a better picture of autism's causes.

While previous research used data collected from school age and older children, the new study included mostly children in their pre-school years. The U-M Autism & Communication Disorders Center used data collected from 13 sites across the nation as part of a larger project within the Collaborative Program for Excellence in Autism.

The studies are detailed in three upcoming medical journal papers by U-M researchers Jennifer Richler and Rhiannon Luyster and University of Cincinnati researcher Cindy Molloy. They looked at numerous factors contributing to Autism Spectrum Disorder (ASD).

The researchers found:

• Nearly 77 percent of children experiencing language loss also lost communication skills in non-verbal areas. Children who used words and then stopped talking showed a pattern of developing and losing non-verbal communication skills, including responding to their name, imitation, direct eye gazing, gestures, participation in social games and receptive language skills before speech. They went from having more of these skills before the loss than other children with ASD to having fewer of these non-verbal communication skills after the word loss.

• The mean age of loss was 19 months. Although children with regression had less obvious autism symptoms before the loss, most of them already had begun to demonstrate subtle delays before the word loss.

• There are mixed results indicating there could be a possible regressive phenotype of autism. For the most part, children with ASD who had regression overlapped in symptoms with children who had never lost skills. The patterns of development described by parents of children with regression, however, were very similar across different sites and children. Most saw real losses in the children and not gradual realization by the parents that something was wrong.

• There is no evidence that regression in ASD is associated with the measles-mumps-rubella (MMR) vaccine. Most children receive the MMR vaccine between 15 and 18 months, which is around the same time that the losses occurred. But variations in when children received vaccinations were not related to variations in timing of regression, and children who received a vaccination before parents reported that they became concerned were just as likely to already have delays as children who received vaccinations after the onset of ASD.

The study, gathering information through collaboration with many of the nation's top universities, brought together data from 1,592 children diagnosed with ASD across the 13 sites during a five-year period. Researchers gave greater analysis to 351 cases, to include 163 with regression and 188 with no regression.

Autism is a complex developmental disability that typically appears during the first three years of life. ASD impacts the normal development of the brain processes related to social interaction and communication skills. Children and adults with autism typically have difficulties with verbal and non-verbal communication, social interaction, and leisure or play activities.

Center Director Catherine Lord, a nationally known pioneer in autism research, played a key role in learning how to properly diagnose 2-year-olds a decade ago. She is confident the University's research will make it routine to diagnose autism for children 18 months old, and perhaps younger.

The number of children diagnosed with the disorder has increased tenfold during the past decade. The center has been conducting a sweeping longitudinal study of children with ASD that started when participants were age 2. Most of the subjects now are in their teens.

More on the Autism & Communication Disorders Center: http://www.umaccweb.com/ >

Editor's Note: The original news release can be found here.

Is it possible that changes in development during the toddlerhood of autistic children may be more noticeable simply because it differs from the norm in a qualitative way?

I think AS parents see different features of child development as important compared to NT parents or experts. I was much less aware of my kids' communication development than the child health nurses who I took the kids to for their checks. In hindsight, one of my kids was late in talking milestones, but at the time I had no idea, and when that child started doing that pointing to things gesture that the child development professionals think is so crucial to intellectual development, I just thought it was some cute idiosyncrasy. I never realised that I was supposed to be getting anxious and having sleepless nights over these things.

Yeah I can see your point on that. That could be a possibility but I think things have become more noticeable since this 'milestones' thing they put out on child development in books and people freaking out if a child doesn't mean a milestone when the charts say on average children should be doing it. It doesn't take into account the individuals strengths and weaknesses in different areas or any potential cause behind them (ie. health).

With Dylan, we thought he was a calm, independant child that didn't want to be held, we didn't really notice till looking back that he didn't look at us as much as other babies might look at their parents. He seemed to have a long attention span which we thought was great and he didn't really have seperation anxiety or security 'objects' (blankets, etc.), he rarely cried. Most parents would likely love a child like that I'd think. We just pretty much only noticed that he didn't seem to progress in use of sounds. It wasn't till early intervention came in and all that we were told that there was these 'red flags' for autism that I looked back on things and I knew he was different but I couldn't think of it in any bad way, I thought it was positive but most know, professionals can make parents believe it's a bad thing or even dismiss parents' concerns.

I guess I was just too busy loving and accepting my son's differences and the fact that he is completely unique and cute to be totally 'devastated' like some NT parents tend to be when finding out their children are autistic. I just decided, my son is who he is as he was meant to be that way, whatever he needs help on as far as language/speech, I'd help him with so he could have some help in communicating as I know he was getting frustrated through his tantrums. I wasn't going to try and change him as an individual that is why we have done little for 'therapies' other than speech to help him talk (as he has an additional speech disorder) and occupational therapy to help him more with his fine motor skills. I have gotten criticized by a lot of people for not going out of my way to do all these biomedical interventions, ABA and such. I know what Dylan needs, he needs my love and acceptance and allowing him to be who he is.

If only some parents wouldn't treat the milestones as the bible so the child must meet everything at what those charts say. I think it's more of a cause of stress to some parents out there than really it should be if only these darn drs. and such would explain that to them.

My kids didn't need "security objects" or dummies, which is good because my hubby and I think these things are rather pathetic. My kids were quite independent too, in fact trying to run away as a young child is a family aspergian trait.

When you mention experesions like "red flags" for autism I think it shows how much emotion and emotional manipulation is associated with having a child diagnosed with an autistic condition.

Do the speech therapists work on the assumption that your autistic child probably has CAPD? Has he been tested for it?

I really don't like the term 'red flags'. It makes it seem like there is something wrong with a child not that the child is different in his/her own unique way.  No they haven't tested for CAPD as they say he's too young to be tested for it, they don't normally test till 5 or 6 where I live. And yes CAPD has been brought up to me as a possibility, I know likely that is why I've had problems myself with always being able to follow conversations and such due to other noises and such around me and not always being able to filter out things that aren't important to the conversation. He does have verbal apraxia though which has him on a much lower expressive language level than he likely would have been without it, of course removing his tonsils and adenoids recently aided in some improvement in clarity of his speech.

Hee hee.  Me too, I was terrible about that.  If I got bored at school, I would sometimes wander off and go play in the woods.  I can imagine what awful things the school officials must have said to my mother.

When my kids were little, my husband put double-sided deadbolts on all the doors so the kids wouldn't get out and go exploring when we weren't looking.  However, that didn't stop my son from jumping out a window into a snowy bush one morning when he wanted to play in the snow.

LOL Now that you mention it. I had never really thought of that as a trait before. Hehe. And my parents always wondered why I'd just disappear off somewhere at times. Interesting point.

I'm sure it's no coincidence that regression happens with language acquisition. If such withdrawals are a choice, due to the apparent incomprehensibility of the way NTs use language, doesn't it then follow that putting such "at risk" chidren under pressure to "engage" will only exacerbate the problem?

Aspie parents who simply don't notice or worry about these "red flags" seem to me to be doing the right thing instinctively, which is not to get excited about it. I don't recall my parents ever showing any concern about my "development", and I'm pretty sure that's why I got through this stage unscathed.

Sympathetic attempts at "engagement" may be OK (but perhaps superfluous?) but pressurising such children to conform to expectations is surely the wrong way to go?

MishLuvsHer2Boys wrote

I know some people who had this done when they were little, but they still have monotonous voices (unless they "put on" a perky voice) and can't sing for nuts, and one makes entire syllables disappear when they speak.

Gwynfryn wrote

I don't remember much about my childhood, but I recall having a cynical attitude about the way adults communicate from a young age, and I took most of what they said with a grain of salt.

Yeah no doubt. Dylan also has the additional challenge of having verbal apraxia which is also a neurological speech disorder that gives him trouble sequencing sounds to words so often it's very hard to understand him and add on that his tonsils were near touching each other in the middle of his throat definitely didn't help in any more clarity. We actually understand more of what he says now even though he still has the garbled problem at times when talking than before the surgery. The words he has practice enough to be somewhat clear are much easier for him to say now without sounding like he is chewing on marbles. It's nice to be able to understand a good part of what he is saying. It definitely makes it less frustrating for him when we are able to understand him. His voice has kinda raised from a lower 'monotone' to more higher pitched one that is sometimes song-like even though it remains monotone for most part unless he's excited. The good thing is he is definitely getting more understandable in his verbal expression to people outside of me and his family and I'm sure that will help him in the long run of things. I am so glad that I didn't have that problem as a child. I had my tonsils out at 9 yrs of age and I even still consider myself 'monotone' to myself. Of course, the surgery also helped him to be able to swallow better and all so I guess he overall benefitted from it. He's even looking like he's gaining a bit of weight on his legs where he was looking almost like a skeleton. His sleeping and breathing has improved. Just hope that keeps up. I know what its like to have poor sleep and its not easy to deal with others if deprived of it.

Possible. Yes. Because nobody expects that a small baby should be able to talk.

But in the case of so called "regression" -- it is not a case of simple language delay, but of already developed skills disappearing, so to speak.

(And I know someone is going to take issue with some word in that last sentence. All I can say is, please don't. Language just doesn't have any better way of saying what I was trying to say.)

That's dreadful! I understand some teachers still do that kind of thing, showing just how unsuitable they are for that kind of job.

A lovely friend of mine (legally blind/epileptic but now thinking he might also have Aspergers) said his classmates in 4th grade told him that the teacher had thrown him across the room. He doesn't remember the incident himself because he had a major epileptic fit at the time. His dad was up at his primary and high school at various times to talk to the teachers about bullying and other issues.

At high school, he absolutely refused to wear the uniform. I didn't like my uniform much, but was too chicken to refuse to wear it. I got in trouble for wearing the regular uniform when it was sports day (I thought sports would be cancelled that day because it looked like rain, and I also put on a cardigan as I had a bad cold).

I cried when the teacher roused on me (I was 13) and he eventually said he was sorry - he didn't know I felt sick. I wasn't sick enough to stay home but too crook to play any sports.

Perhaps I've "regressed" with regard to emotional regulation and sensory issues simply because it now takes too much energy to suppress these things. In other areas, such as learning to socialise and "read" other people, I think I've improved somewhat over the years.

I also believe the effects of emotional trauma have particular effects on how Aspie manage their emotions as it can easily overwhelm their coping strategies. This always needs to be taken into account when any therapy is considered.

Hmm, I'm not sure how to label any emotions I feel until some time after the event. Usually I find fear and anger are very closely tied together in that I very seldom felt one without the other being there as well. I can also feel happy and sad at the same time and even occasionally happy and angry or sad and angry. There doesn't seem to be too many different shades of emotion though. Most of the time I felt rather neutral.

Makes me tired even thinking about all this.