That said, if she isn’t autistic, but the label gets her the services she needs through the schools? It’s a good thing.

One thing that bugs me about this feral child thing… I took a linguistics class. The instructor explained there are whole cultures that do not converse with children until the children can hold a conversation. Those children learn language. I’m inclined to think this ‘feral’ child had special needs before she was grossly abused and neglected and the abuse and neglect made them worse. I also agree with the comment that the mother has her own issues and was probably once a victim herself. The fact that she had no idea of any services her daughter should have been able to get, is a strong, strong indicator. She could have been flat out lying about schools not taking her, though. But schools HAVE to.

It also kind of pisses me off though, because it’s stories like this that make people think my son is neglected on first glance. With exception to her aversion to touch, and the fact that he does smile, an awful lot, actually, he does a lot of the same things she does… (it doesn’t help though, that he’s tall for his age and they tend to think he’s older than his 5 years, especially because I’m not tall, and he’s got a horrible callous on his hand from biting it… that looks like a burn… and I tend not to freak out about him mouthing things that aren’t going to hurt him… because I’ve given up on that battle, it wasn’t worth the stress…).

I can relate to what you’re expressing about your daughter. My son is autistic and has progressed very well with limited therapy. He’s improving because, in my opinon, he’s growing up. All children grow and learn. I believe that even if he does grow to the point of being ‘normal acting’ he will still be autistic. But instead of being an autistic child he’ll be an autistic adult. Autism is a diagnosis of developmental delay, not developmental stasis. ( I really can’t remember who said that first, it was a great blog I read sporatically, was it Prometheus??? anybody know??)

http://www.feralchildren.com/en/showchild.php?ch=genie

“Genie (not Jeanie, Geanie, Jeannie or Geannie and, in any case, not her real name) is a modern-day “wild child” who, until discovery at the age of 13, had lived in a state of severe sensory and social deprivation. Strapped to a potty-chair in her home in Temple City, Los Angeles, California, Genie wasn’t taught to speak, and was denied normal human interaction. “

The romanian orphans who suffered severe emotional neglect are not different than ‘Kanner autism’ as you implied. These children were all diagnosed using ‘Gold Standard’ diagnostic tools including ARI-R and ADOS-R all of which are based on DSM-IV and ICD-10 diagnostic criteria. The authors state that while they obviously meet all diagnostic criteria for ‘autism’ there must be something undefineably different about these children since they do not fit the widespread belief in behavioral genetics as the sole answer for understanding the mechanics of autism etiolgy.

In fact, what should be questioned is the validity of the so-called Gold Standard diagnostic tools that would confer an ASD label on children as diverse as Romanian orphans and mentally retarded Fragile X boys, or adults who were diagnosed with a pragmatic language disorder decades ago but who now meet diagnostic criteria using the same Gold Standard diagnostic tools eg ADOS-G.

One has to seriously question whether the ‘Gold Standard’ diagnostic tools currently in place should be more accurately described as ‘Fool’s Gold’ diagnostic tools.

We know it’s more than “just” sensory challenges – there are some definite social/anxiety and communication challenges with some delay in emotional expression. Is it autism? I guess there’s plenty of people that will debate that to my face, behind my back, etc. I feel as you do, as long as my daughter is thriving – if she’s healthy and happy and what we’re doing is working and helping us help her, I guess I don’t mind what it’s called (or not called) by other people. She is doing very, very well. She’s been out of all therapies and treatment for seven months and she’s done nothing but grow and learn and progress. She’s a brave and persistent child and her stubborn, fiercely independent nature certainly helps her along.

Thanks for letting me veer a little off topic.

Thanks for sharing all that, about your own past and about your daughter—–and none of this is off topic or a side topic, really! You wrote—

Autism sums it up well and quickly for me and it helps guide my direction in knowing how to understand my daughter

I think if the label is, at this time, helping you understand your daughter and also figure out how to best help her, it’s (at this time) good and the right thing. I tend to veer on the pragmatic side and see a label as a means to help my son get the services available for that label; as time has passed, diagnoses like “autism” and “autism spectrum” have not seemed the overarching, defining words they did at the beginning. I used to see a term such as “sensory processing” as, sometimes, things to say my son didn’t have—as if the autism diagnosis was “enough” and why worry about more—but now I think that it’s more helpful to think about emotional disorder, speech disorder, and see how these might help explain my son (if that makes sense).

Sounds like daughter is doing well, despite all the talk (or not!) of disorders and diagnoses?

I thought it was interesting (sadly so) to read the part of the interview where her birth mother speaks about Danielle’s background. It made me think about the cycle of child abuse. As a child of abuse, I had a choice to make with my own children about how to stop that cycle. But I had resources, education, an understanding and support system. I wonder how much of that Michelle had and also, Danielle’s birth family has a history of disabilities or learning challenges. If a typically developing child can perpetuate the cycle of abuse, I wonder what happens if a child with special needs is neglected to a point where as an adult they have no understanding of how to truly take care of themselves (self help/life skills) or anyone else, thus the neglect like you see with Danielle. I’m not blaming this on special needs at all. However, it did make me wonder what happens to children with disabilities who are abused and then go on to have kids of their own. They would be just as likely to perpetuate the abuse/lack of life skills understanding as a typical child would (minus – usually – the lack of life/self help skills). I wonder what kind of parents Michelle had and what kind of environment she was raised in.

My daughter certainly doesn’t have this same type of “environmental autism” now that I’ve read through the newspaper story. We used to say though that her behavior made it seem like she was adopted from an orphanage and how hard it seemed we had to work at growing a connection between us (at 3.5, it’s finally there – though she still doesn’t say I love you or offer any affection).

Is there any harm in my daughter carrying an autism diagnosis if that’s not truly what she has? Should she carry a sensory diagnosis, with a hypotonia diagnosis and a sleeping disorder and a speech disorder and some kind of social and emotional disorder with an anxiety disorder? I get frustrated by not knowing whether the “label” is a good thing or a bad thing – any of the labels. Autism sums it up well and quickly for me and it helps guide my direction in knowing how to understand my daughter. But I wonder a lot lately if it really is autism or something else (maybe something along the lines of what all these “recovered” kids have/had and the treatment the parents did only acted along side the progress the child would have naturally made?) Does any of this matter really in the long run or do people care deeply about the labels or diagnosis one carries around if they aren’t appropriate or accurate? She isn’t in therapy either way (as therapy seems to either not help or make things worse – is that weird?) I know this is a side topic to your post and I didn’t mean to hijack it – sorry!!