Planning For A Better Future

Part 1 of 2 sessions of the IACC Full Committee Meeting happened this past week. It is a relatively new government organization created out the 2019 Autism CARES Act to help inform the government about the needs of the autistic community - most importantly past the age of 21 to include information for a full life's span. 

Here are some topics that re standing out for me:

• Acknowledging trauma from denied or lack of services.
• Discussions around race - how is research being conducted and the need to consider that this can add layers to the needs of families and autistic people.
• The need to connect mental health with services for autistic people.
• The need to add training for medical professionals for dealing with and providing services for patients with special needs and autism.
• The lag between research and tangible services, changes, deliverables.

The committee also stressed the importance of local non-profits as a source of information, services, and partnerships.

The IACC website includes links and events happening in April for those affected by autism and the public-at-large.

I am glad to see this happening.

On the Cusp

 We are 100 days into James' first full year of in-classroom high school. He's a junior. Let that sink in.

Life has been out of the ordinary for so long that it comes as a shock to come up for air and realize that I am behind getting legally and strategically prepared for getting James ready for his adult phase. I am working on that. 

Everything I have read and heard indicate in a very few years, this is when he drops off a cliff for services, etc. 

So much to do. Still a little time to get it done.

Wish me luck.

Autism Numbers Up - Why You Should Care

I've been catching the stories online about the latest CDC numbers for autism: 1 in 88 children; 1 in 54 boys. In some regions of the United States, the numbers are even more alarming, such as 1 in 47 children in Utah. Many people seem to think that better detection is responsible for a big portion of these higher numbers.

I agree that better diagnosis and detection are boosting the numbers, but that does not address the initial cause of autism. It seems logical to me that the growth in the number of children diagnosed with autism would not be so steadily climbing without some other underlying causes, such as environmental factors or genetic factors.

My own personal belief is that there is not one answer, but several, and that it may take one cause or a combination of them to cause autism. I also think that modern living and its byproducts are somehow causing more frequent occurrences of autism.

These are guesses, based on personal observation and reflection. What we all need is scientific research to track down causes and patterns. I'd love for parents to be partners in this, because many of us have been living with autism longer than researchers have studied it.

Think about how many children are on a playground, a classroom, a school, in your family. Think about schools being required to provide services while their budgets are slashed and training is reduced. Think 10 years in the future, if the numbers continue to increase. How many of these children will be autistic? Think of what happens when autistic children turn 18, and are largely cut off from services and resources. How well prepared will they be? We as a society need to care NOW. Parents need more information, and better resources to prepare their children for as full and independent a life as possible.

We need better supports and services, because the best practice right now to address autism is early detection and start of therapies and treatments. Not only are they effective, but they also reduce the need for services later. I don't think that parents who have navigated bureaucratic processes want to continue it for a lifetime. I think it's pretty safe to say we's like our kids to need as few therapies and interventions as possible. Also, trained parents can be an awesome component in their child's treatment.

We the parents need hope as we grapple with rising inflation, foreclosures, job losses, marital stress, social isolation, cuts to schools and regional center programs, and denial of services by our health care coverage. Not to mention bickering politicians in an election year.

What can we as parents do?

• Continue to advocate for services for ourselves and children. 
• Network for successful therapies and resources. 
• Write and call our elected official and continue to let them know we are a growing segment of their constituency that has needs and wants to one day be self-supporting and independent.
• Raise awareness by speaking up and out about autism and what it mans to you and your family.
• Support each other with in-person and online support groups and activities.
• Love our families and laugh as much as possible; smiling is good too.
• Set goals and learn from what does or does not work; allow space for growth and change.
• Don't be afraid to tell providers and educators what you need for yourself and your children. I have been amazed how powerful a clear statement of needs, reinforced with polite insistence, can be.

If you are not a parent of a child on the spectrum, and have been reading the headlines and wondering about it, please consider becoming more informed and helping. There is certainly a need for it! 

• If you know someone who has a family member who is autistic, talk with them about it. Listen to them. Think about what you might be able to do and then act as you can.
• Make a contribution to an organization that helps with autism. Autism Speaks is a very good voice for the autism community, and raises money for more research.
• Support local non-profits, who are not only front-line providers, but have had their funding majorly slashed. If you look at the right column of this blog, you sill see the non-profits who help us. Here is a more generic list: Regional Centers, Easter Seals, Cerebral Palsy, Scottish Rite, and your local public schools. 
• For school-aged children, the two biggest providers of services are the Regional Centers and the public schools system, and their budgets have been decimated by state budget cuts and are the first to be targeted every year for subsequent cuts. They are hamstrung, even as demand for services rise. They need your help! Support for services sooner means a greatly decreased need for services later.
• Support can mean donations of money, time, or materials. You can call or email to find out what these organizations need. 
• Volunteering can mean so much. It looks like giving your friend/family member a break - even 20 minutes is great for a run to the store, a real shower, or a power nap. Non-profits need volunteers to staff and run fundraising booths at events. I personally have volunteered my services to create websites, brochures, and graphics, as well as edit marketing materials and make presentations to groups and committees.

Combs and New Discoveries

I read about some exciting research that came from the MIND Institute that two distinctly different types of biological Autsim have been studied and confirmed. I find this both fascinating and exciting, because it confirms some of my experiences with James and gives me hope for the future.

How many of you have heard the phrase "You've seen one person with Autism .... and you've seen one person with Autism"?

 *Raises hand*

It's felt so true to me. Especially from the days when I first started to really admit to myself that something was not right with James' development. Everyone had their opinion as to "was he ok / was there something wrong," with many people of the former opinion than the latter. Right up to his pediatrician who told me "He can't be Autistic - he looks you in the eye."

I could see their point, and still can. James, while exhibiting some classic Autistic traits, has always loved people and openly shown it.

Even during the scary period of time when he'd "zen" out and stare off into space, not responding to his name or a hand waved in front of his face (and we became scared that he might be having mini seizures) he'd gravitate to a group of people hanging out and socializing. He loved playgrounds and never retaliated with force or biting when some of the kids played roughly in the sand box or rocking animals. He had gorgeous, enormous blue eyes and he'd smile so sweetly at you he'd melt every heart in a 25-foot radius.

And yet ... I felt a lack of connection with him. He was spookily calm, and made noises like a squawking parrot rather than a toddler to communicate. His fingers and wrists splayed at odd angles, almost frozen. He could hear a pin drop from halfway across the house, loved music, and his big sister. He did not line up his toys, yet he did repetitive motions and loved to spin things.

At the CAD Clinic, it was informally thought that James would test at Pervasive Developmental Disorder-Not Otherwise Specified (PPD-NOS), but in fact he tested with more severe needs as Autistic Spectrum Disorder (ASD). One of the clinicians explained the findings as James having both strong strengths and weaknesses, with the former being the teeth of a comb and the latter the comb's gaps. In some places the teeth (strengths) had no gaps, in other areas, some teeth (strengths) were missing, forming bigger gaps.

I like the comb analogy. Do you know how many different types of combs you can find at a store?  Think of all the combs you've had -- many different types, yes?

Now just think if further research enables us to identify and categorize Autism as we now can tell the difference between a pocket comb, a pick, a flat-top styler ... and then builds therapies that match them and helps those on the Spectrum to led lives that are as happy, productive, and independent as possible. Oh, yes, I am getting excited all over again. I think this is on the right track.