In May of this year, I joined in a focus group lead by a project leader at the New Hampshire Council on Autism Spectrum Disorders focusing on several issues. It took place at an annual conference in upstate.
It is now almost Thanksgiving, and according to inside sources (whom I won’t name publicly) have said they will release the report till next spring – nearly a year after I would join the group.
Why in the hell is the special needs system so slow to address an urgent concern to any citizen with autism in New Hampshire? Why are the mothers of 10 year olds running the show? Why do we have out of staters on the board? What has this Council have done for everyone in this state?
I’m really disturbed by the politics in Concord, and the politics within autism, and the politics of Concord plus autism in New Hampshire.
Our favorite pasttime is what really hurts all autistics in this state. It’s time for people have accountability, strict timelines (i.e. get the funds, use it, and get the report done in an urgent matter.) If you can’t get the time to do it to take care of your autistic son, then outsource it to someone who can get it done in months, not years.
Or expect to see more hopeless autistics by year 2020.
The numbers of people with autistic disorders are now 1 and 50 children. If there are more children being diagnosed (whether or not they are being properly diagnosed is not the scope of this post or site) then how come people are not willing to accept there will be more of us then you?
The high functioning autistics and journalists covering the disorder believes that autism has always existed, meanwhile the anti-vaxxers believe the polar opposite, and joe shome families and individuals (like me) are saying “what about us?” They’re like My child is no longer a baby, they don’t know where they want to go in life. The system says he’s too high functioning to receive services. I never say this out loud, but I’m hopeless.
I’m going to break my rules of avoiding using the “Five Whys” or “Use one of the Five Whys Five Times” and ask:
- why is the system slow to respond to the Autism Crisis Epidemic?
- Why is the late 90s of “everything was fine in elementary school but middle and high school brought my child to hell” to this day?
- School districts and other associated agencies say “We can’t accommodate this” or “you” or “your child is too high functioning to receive services” while Voc Rehab and the mental health system are not appropriate services. so why the hell is this still continuing?
- Why are transition plans (if there is a real such thing) that on paper look good, but about 9 times out of 10 end in tragic conclusions (dropping out of high school, unemployed, attempting to kill themselves, etc?)
I went to school in both states, New Hampshire and Massachusetts, and I never heard the positive propaganda pushed by the special interests groups in Concord. I’ve dealt with harsh realities. I never believe in the “Safeguards for Children with Disabilities” crap at the last page of my IEP. I lived in New Hampshire but had a Massachusetts IEP, despite what some of my colleagues in the special interests groups state “you have minimal rights when living in New Hampshire”. Well that’s great, but no one follows every law and even the state’s Disability Rights Center can reject complaints.
I’ve been lied to. I’ve been manipulated by “professionals”. I’ve worked with professionals who just “did the job” for 8 hours a day, and never had remorse or guilt when they came home. They had zero business working with special needs, but they got away with it.
There are so many people like me but the system can’t support quality professionals or reasonable laws to protect our rights. There is so much skepticism and scrutiny of not only the funding of services, but the disorder itself. People should’ve cried the “Autism Crisis” warning in 1995, not in 2005 and indefinitely not 2015. What’s more disturbing is this “Autism Crisis”, that resolutions are in humaine types, which were expected (for a minimum) 20 years ago.
We have just moved backwards and not forwards, which is why people need to call a spade a spade, There Is an Autism Crisis in the Granite State!