Autism

Having just had a child graduate I think most parents don't advocate for better transition because they are unaware of how bad adult services really are. They just assume that there is something out there waiting for them and the schools do nothing to stem theidea because it makes their job easier.

You are so right that parents need to be told about transition services and planning for children while in high school. Vocational training needs to be written into the IEP for those not going on to post-secondary.

Parents also have no idea that the IDEA does not cover their children in college and that the ADA applied is woefully inadequate to help post-secondary students. Most of the colleges do not know what to do with the aspies who are coming, and their parents are also unaware of the problems the children will encounter.

There needs to be a concerted effort to get the word out about lack of services for all who graduate.

Even programs that are available do not provide necessary supports to make transitions successful. While speaking with a program manager for my son, he said, "That's why we aren't taking kids on the spectrum now. They don't really fit our programs." and yet this is the ONLY program that was suggested for him. :(

We've heard something like that already in trying to get my son into some programs (Special Olympics in our town, in particular). May I ask what has been helpful for your son---programs, other supports?  I really appreciate knowing!

Kirstina-  I think that you were asking Nomi, but I can tell you some of the things that we're in the process of doing for 2 of my kids now (all of my kids are now 13, but we're doing adult planning sessions now). 

A lot of programs that can be useful aren't always geared towards people who are specifically on the spectrum, but you still may be able to take advantage of them.  Special Olympics is obviously all-inclusive, but they often have resources that go far beyond specific sports and training (I've been involved with 2 community Special Olympics organizations, and one of them was all about winning ribbons for their organization).  Two of my kids are involved with Special Olympics (their schools did it every year and they "train" throughout the year), but through Special Olympics they also have access to a range of different things- some extra PT and OT (often under the table), inclusive family nights like bowling and swimming and hiking , as well as a huge range of contacts (and  workers/babysitters/volunteers) as well as providing volunteers for inclusive gym classes in schools.  

Similarly, ARC industries (and other similar organizations)- although we're not officially involved with them right now, have a lot of resources that we've been able to access about necessary employment skills, mentoring, and advocacy for school involvement in career planning. The Deaf and CP communities also have strong advocacy groups in our area, and it's often possible to piggyback on to some of their services if you can build up a good rapport with them early.

I'm not sure how it works in NJ, but in Ontario we have different "Ministries" (departments) that deal with children and adults.  Contact the "adult" department (if there is one), and find out what exactly they can do to help with Charlie's adult planning.  Most of the adult planners from different ministries and organizations that I've talked to would very much like to be involved in adolescent (high school) planning, because they know what's available now, how you can make it easier for your child to make the translation from child to adult services, and if necessary are more than willing to start putting the pieces in place AND advocating for future budget needs to make sure that the transitions that you want to make can be possible.

You know how slowly bureaucracy works, and if anything the people who offer adult services are often even more frustrated than parents are with the services that are available, but if they can start pushing for funding NOW there's a chance that it will become available in 5-10 years.

We're all pretty up on online things here at this blog and others, but there's no substitute for talking to the autistic adults (or their parents) in your own community to find out what exactly is available right now, and what you need to do to change things.  I'd spoken at a conference a few months ago about employment for autistic adults, and then about 2 weeks ago ran into a taxi driver who told me about a woman in town with two mid-40s autistic children who had managed to get special programming and opportunities (and a few laws changed) for her children, and I'd never even heard her name before despite my contacts in our community because she's been "quiet" for about 15 years now.  Looking through old minutes and press releases from your local autism society or even mental health clinics (as there are places where autism is still classified as a mental health issue) can be very illuminating and provide you with good contacts- use them.  I've never had a bad experience when I've called a local person from a number that I found online and just asked for help or advice.

One of the things that I've recently been coming to terms with is that not all autistic adults are going to have the desire or ability to pursue employment when they are adults, which means also starting early advocacy for meaningful activities and opportunities instead of just having them sitting around watching TV all day (which is pretty much the norm in most group homes or independent living projects).  You'd be surprised where you can find opportunities in the most surprising places where your child (as he or she is now and may be in the future) can possibly find things to do which he might find enjoyable as well as meaningful.  I met a man a couple of weeks ago whose wife is in a nursing home (he lives in an apartment attached to the nursing home so that he can have regular and consistent contact with his wife), and who has been teaching and volunteering with special education people for almost 50 years.  He has 3 non-paying "clients" who he is involved with on a volunteer basis, and not only do some of his clients help in the horiticulture section of the nursing home, but he has set up his apartment with one room set aside as a sensory environment for people whose housing situations do not allow them space to be alone and peaceful, and he also fosters and trains future guide dogs for autistic people so everything kind of blends together. While this man is an exceptional person, he's far from the only one, and you have to look for and search out individuals like that.

This might be something that Charlie might like- one of my brother's old high school friends owns a high-end bike shop, and he has a non-verbal autistic employee whose job at the shop is to test out the new bikes who come in for repair/are just going to be sold- his employee puts them through the workout on a bike track where he is safe, and seems to be loving it, and is also well-paid for it.

My son is already in care, medicated due to self-injury and aggression, and most of our energies are devoted at the moment to keep him from harming himself or others.  While we are continuing (and always will) to establish communication with him to find out how to best communicate with him, I also want him to live the best life possible.  He loves being outdoors and as solitary as possible, so we are looking at everything that we can to give him that opportunity while still keeping him safe.  Right now I'm talking to a Ministry official who is involved in trail upkeep, and that seems to be something that my son might be interested in.  One of my daughters is very verbal as well as having major sensory issues and behaviour problems, so we need to find a completely different living/work/leisure situation for her.  

My kids deserve living/working situations that are appropriate for them and which will enable them to express their own desires and preferences as much as possible.  Living at home will not be an option for them- my son is already physically strong enough that I can't prevent him from hurting himself or others, and my daughter has already let us know that she will move out when she is an adult because "that's what adults do".  My job as a parent is to provide them with enough options that they can live the lives that they want to live, and that means thinking outside the box as things stand in our province now.  

I've found over the past 12 years since my kids were diagnosed that it's pretty easy as an "autistic" parent to isolate yourself from your local community, but that really works against you as you are considering adult planning. There are a lot more people in the general community who are not only familiar with autism now, and who are not only willing but eager to make contact with our children who have so many skills.  Make contact with the people why physically live around you, and think outside of the box.  

If you think that your child is going to be eligible and capable of post-secondary work, contact your local college/University and find out exactly what their programs/expectations are when you child is an early teenager.  Find out what accomodations are needed, and if they're not there, start fighting for them NOW.  There are a lot of post-secondary instituations that have wonderful programs and supports for autistic people, but start checking them out now and gearing your child's high school education towards those programs (or fighting to get the accomodations changed before your child goes there). 

I realize that it's not a popular opinion in the "autism community" (whatever that is), but early intervention takes up about 6 years of your child's life, and it's well past time that we start thinking about how we can best support our children as adults.  If there's anything that I've learned from Beth, Temple Grandin, ASAN, Donna Wlliams, Amanda Baggs, and Ari among other people it's that we need to think outside of the box when we are considering what our options are when we are thinking about adult supports and opportunities for our children.  I don't philosphically agree that I should be accessing "mental health" resources for my autistic kids, but if that's what it takes, I can put aside my philosopical objections for a while.  

After your kids are past 10, if you live in the Western world, you should be accessing and planning for adult services.  Most adult service workers would prefer to be involved in high school planning, and that's only a benefit.  Don't wait, and don't believe any government agency when they tell you that it will "work out". 

I'm sure that I'm not politically correct enough or tactful enough to phrase all of this well, but please, just start planning for your kids' adult lives as early as you can.  My children are incredibly wonderful, talented, artistic, intelligent children , and deserve every chance that they get, and after being in the autistic world for over 11 years now probably the main thing that I've learned is that childhood is very, very short.  I need to try to think outside of the box to enable them to live the best adult lives possible. 

(sorry for the rant- it's Sunday morning). 

A "rant" to save!

One thing I've been noting is that, while tools for transitioning are in place and being put into place, what's missing are things (jobs, programs) for adults to transition _to_. We've had to think outside the box again and again to figure out things for Charlie; indeed, life with him has required that kind of thinking. Thanks for some more ideas.......

With autism and aspergers being a relatively "new" and accepted diagnosis, we will hopefully see rapid growth in social service supports for #asd teens, young adults and adults. If we want that to happen, we must actively advocate for it. Until then, our aging asd population suffers, and caregivers continue to be misunderstood.

I don't know where you live, but the IDEA governs school age children. it states that the school district must pay for services regarding children. They can ask to see if the insurance company covers services but they cannot deny services to children just because there is no insurance coverage. The federal law governs, it is called the supremacy act of the constitution. If you have been denied services for your child based upon this law you need to contact Office of Civil Rights in the Department of Education and file a complaint against your school district. there shouldbe access to OT, PT, speech, behavioral support and education overall. There are a myriad of programs that can be established for ASD children depending on the severity of the issues. Contact the local autism chapter or one of the national organizations I am sure they can send you in the right direction. Also  I know of disabled children getting medicaid waivers to help the district pay for some very expensive schools. 

 As far as adults are concerned they can get social security and medicaid fundingfor their services, but the state has to fund the remaining difference for state run programs. There also has to be access for these adults to any program run by the state ADA. I know that many places do not have these programs or they wholly inadequate.

Insurance funding in and of itself is something else. I would not be surprised if these companies start leaving your state, or  the premiums become prohibitive. This is all part of the break down of our health care system. I am not a fan of national health care, because I also know of horror stories where the bureaucrats (in countries that have national health care) decide some children are beyond hope and deny therapy to them, but I know something has to be done.