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April 13, 2015

Dateline: On the Brink: Adults with Autism Aging Out

Award Winning Non-Fiction Blogs - BlogCatalog Blog DirectoryA recent Dateline special, “On the Brink,” (April 12th, 2015) sounded the alarm that autistic adults aging out of special education have no place to go. For those of us with adult children on the spectrum, this is not new news. 


The good news is that if you live in California there’s the Lanterman Act, the law that states people with [autism], no matter their age or degree of disability, have a right to needed supports and services.  Specifically, the “right to prompt medical care and treatment”, a “right to physical exercise and recreational opportunities”; “right to be free from [self] harm” and right to lead “more independent, productive and normal lives.” (CA. WIC CODE 4501 & 4502 (d) (h)).

Where will you encounter these laws? Where will you have to cite them? Well, California is unique. In California we have what’s called Regional Centers. There are 21 Regional Centers scattered around California. Each one, responsible for coordinating and providing services to children and adults with autism and other developmental challenges. I am proud to live in California. Mainly because we are the only state that has openly taken responsibility for caring for developmentally disabled population. 

That’s not to say this means you will automatically get services. Because of budget cuts, in all the wrong places, you have to fight for needed services. Sadly, this often pits parents against the very Regional Centers that were created to provide services, under the Lanterman Act.

Because funds for disabled are coveted by each Regional Center, Regional Centers will often tell families they can’t provide a service if it’s not in their purchase of service policy (POS). 

What if a Regional Center determines your autistic child, as per their POS policy, doesn’t qualify for services? Or they don’t provide a certain service they need? Remind the Regional Center in your area, that the law says there must be “exemption” to their POS policies (CA WIC CODE 4648.5 (c)).

An “exemption” may be granted…when a Regional Center employee “determines that the service is a primary or critical means of ameliorating physical, cognitive or psychological effects of consumer’s [autism], or the service is necessary to enable the [autistic adult] to remain in the home and no alternative service exists." 

Sounds crazy, right? But this is the reality we face here in California, despite being the only state that has the Lanterman Act. The sad fact is that despite the Lanterman Act, if you live in California, you only have rights if you know what they are. 

March 30, 2015

Autistic Adults May not Show Same Signs and Symptoms of Pain or Illness

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Oh, we've been here. And back. Many times. A trip to the ER room. A hospital stay. RN's who have never dealt with an autistic patient with epilepsy or self-injurious behavior. CNAs assigned as "sitters" who think every curious move is a seizure and every vocalization means pain. It's maddening, really. And dangerous to the autistic patient. There's just no way you can teach strangers everything they need to know that fast. For instance, the time our autistic son wanted to get out of the hospital bed, but each time he tried, he'd be excessively medicated with Ativan, so he couldn't get up. The solution we came up with to avoid excessive medication during hospital stays is to have trained people who know our son by his side during the ENTIRE hospital stay. Trained staff knew when to it was "safe" to allow our autistic son to take a short walk to relief anxiety and meet his sensory needs. Trained staff knew when he was hungry and thirsty. Knew how to feed him to avoid aspiration. (One hospital CNA had no clue and kept shoving food into his mouth, while he was having myoclonus seizure activity.)

I also recall the time our autistic son was in hospital and the CNA "sitter" thought it was "okay to let him slap his legs", to the tune of hours of non-stop slapping that resulting in severe bruising to the leg. That's when we decided, oh, hell no, we are sending in trained staff to protect and assist him. This  is insane.

And you can't blame the hospital staff. They don't know him. They haven't been trained to deal with autistic patients who have complex medical and behavioral issues. So, you  must come up with creative solutions.

Below is a helpful article showing what a delicate situation it is when you have an autistic person who can't speak, needing medical attention:


Excellent article about the dangers of overlooking illness and injuries in NON-VERBAL autistic individuals.


http://www.theguardian.com/lifeandstyle/2015/mar/29/autism-ill-health-learning-disabilities-non-verbal-patients#comments