(ORIGINALLY WRITTEN & PUBLISHED ON FEBRUARY 29, 2012)
I encourage you to read the whole article from the cbsnews.com site HERE but if you're too lazy here's the major take aways from the article...
- "Autism should be diagnosed as early as possible, but minority children tend to be diagnosed later than white children. New research is beginning to try to uncover why - and to raise awareness of the warning signs so more parents know they can seek help even for a toddler..."
- "Even when diagnosed in toddlerhood, minority youngsters have more severe developmental delays than their white counterparts..."
- "Cultural differences in how parents view developmental milestones and how they interact with doctors may play a role..."
- "Tots tend to point before they talk, but pointing is rude in some cultures and may not be missed by a new parent.... Or maybe the mom's worried that her son isn't talking yet but the family matriarch, her grandmother, says don't worry - Cousin Harry spoke late, too, and he's fine. Or maybe the pediatrician dismissed the parents' concern, and they were taught not to question doctors..."
- "Studies show that white kids may be diagnosed with autism as much as a year and a half earlier than black and other minority children, University of Pennsylvania autism expert David Mandell said, who led much of that work. Socioeconomics can play a role, if minority families have less access to health care or less education. Mandell found in one of his studies that black children with autism were more likely than whites to get the wrong diagnosis during their first visit with a specialist...."
Ok, now back to me. Autism Daddy & family live in a pretty big city with a pretty diverse population. There's a lot of immigrants ("off the boat") who live in my city, and a lot of second generation Americans. There's a lot of Irish, Italian, Latin American, Jamaican, African, etc. I live in a real rainbow of a city. And I love that about it most days.
Financially the population runs the gamut too...some mid-middle class, some low middle class, some out & out poor.
And while this article was about minorities getting a late autism diagnosis, it made me think back to something that's been gnawing at me for years.
So when I go to my IEP meetings at my city's Board of Ed headquarters every year and I see the things my school district tries to pull over on me & my wife it blows my mind. The wife and I are a couple of white English speaking college graduates. And my son has a slam dunk case of severe autism.
But the incompetence of my school district never ceases to amaze me. And the bureaucratic red tape & nonsense is flabbergasting. And if you are not extremely careful your kid may be left out in the cold. It's a combination of they are intentionally trying to screw us to save money along with being undermanned, understaffed and incompetent.
We were victims of this. It happened to us this past September. Our son slipped through the cracks and had no school placement for the first 2 weeks of the school year. And it took us "lawyering up" (and spending over $1000) and it took alot of advocating from me & the wife to set things right. I had to take quite a few days off from work back in Sept for school tours & lawyer meetings.
What does this have to do with today's report? Well the report is about minority kids getting diagnosed later, but how is the quality of their services once they are diagnosed?
We've come out of IEP meetings, me, the wife, our team of therapists and advocates, and more than once I've seen a Latina mom waiting in the waiting room with her autistic child waiting for her IEP meeting. And my HEART BREAKS.
This woman doesn't speak English very well. The school board probably brings in a member of the board of Ed to act as a translator. She has no "team" with her. She's probably there on her lunch hour or had to take the morning off from work. She couldn't get a sitter so she dragged her poor kid to the meeting.
If they tried to screw us, how is this woman gonna get a fair shake? Can she trust the translator? And how many are out there like that in my city alone?
When Kyle was out of school those 2 weeks in September he had a special ed teacher come to the house for an hour a day. And she told us HORROR STORIES about kids from our city who have slipped thru the cracks, who for one reason or another haven't been placed in a school for YEARS. Some with autism, some with other disabilities, but almost all from poor minority families who just believe what they are told and accept what they are given. And these kids have been receiving weak at home services.
So if you go by the article, at least where I live, if you are a minority AND you don't speak English that well you are ROYALLY SCREWED.
Your kid may get diagnosed late and then when he does get a diagnosis you have to expect to get screwed by the board of ed at every turn.
Maybe this only happens in my city? Or in big cities? Or maybe it happens more that you even know, but you just don't see it in your city because your IEP meetings go so well. You are successful advocating for your child.
But what about that single mom who has the IEP meeting after you?
As hard as it is to have a kid with autism, and how awful my big city school district has been with us over the years, this is one case where I'm glad I'm a white male that speaks English and I'm glad that I've got a flexible job that let's me take time off for emergencies (like IEP mtgs) and I'm glad that I have enough $$ to hire a lawyer to fight the system when necessary.
That's all I got. Whataya think?
If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above or by going to http://www.amazon.com/?tag=a050ef-20 This way I can make a little money to help pay for my son's after school & weekend therapies. This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!