Parents, Autism Spectrum Children and The supports You Need

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I am thinking of starting something small that I hope to grow into something larger and to pursue this goal I need as much information as possible to make sure I cover all my bases as well as to find alternative solutions to some difficult problems.

So I ask the parents that use this website if you would mind sharing with me some of the problems you have encountered over the years with your child as well as the success's.

I would also like to know about what changes you would like to see encompassing all subjects that are of interest for you.

For example do you often find it difficult to obtain services, do you find the right services and if you do what about it would you change and would you keep.

I Really appreciate any and all responses that I receive because it will be going to an excellent end.

Um, wow, now answering that can take a few hundred pages.

Can you help us target this by letting us know what your inspiration is, and what direction YOU are thinking of heading? Then we can run in that direction OR say, well, this would be better ...

Sorry about being so vague its part of hows my Asperger's affects me.

My idea runs around starting an organization, group, whatnot that helps out persons on the spectrum and parents who have children on the spectrum.

I want to create something that will eventually have a loud voice that gives compassion as well as better information and can help people understand what Autism is about.

One of the main reasons I want to do this is because Autism Speaks makes me very angry and in my day to day job I encounter lots of stories and parents who deal with the disability and who have a tough time with it.

So I want to get as much information from parents as to how Autism affects them and what they think could be done better both in terms of, i hate this word treatment, as well as in terms of what kinds of information they need.

I hope this helps, if not I can try and make it more clear.

So do youmean you are thinking like a centre for those on spectrum or have kids on spectrum where they can go for advice and/or services like OT, pyschologist?

One thing I have encountered is people not giving me information or not doing their jobs properly.
Last time we say psych I told him what I was doing and he said OT should be helping me. I am still (over a week now ringing again tomorrow) waiting for a phone call back from paediatrics to see if I can go to GP for melatonin (prescription only in NZ). Can't fault school tho only the red tape beurocrates who decides who can and can't get funding for things

Perhaps a good place to start would be, then, an information source. A compiling of on-line communities, a run-down on the different ideas out there (as much as you and I may not like it, each family is going to have to choose a direction for itself, but feel free to sell sell sell the drug free, parent-getting-to-know-their-child centered approach), personal stories that are positive (not in getting a "cure," but in discovering the gifts of AS and managing the negatives effectively), a list of local practitioners that seem to have a solid and positive understanding of AS, information on products that may be helpful (we here a lot of talk on this forum about weighted blankets, chew necklaces, etc - I had NO IDEA these things were out there), and so on.

There is so much information out there, and so much misinformation, and wading through it can be a chore. Wouldn't it be nice to go somewhere, ask a question, and have someone guide you through that information and help you find something that you believe will be helpful for your family?

(I wish there was a way I could quote what has been said on this forum, if you guys know how to do this please let me know)

So do youmean you are thinking like a centre for those on spectrum or have kids on spectrum where they can go for advice and/or services like OT, pyschologist?

One thing I have encountered is people not giving me information or not doing their jobs properly.
Last time we say psych I told him what I was doing and he said OT should be helping me. I am still (over a week now ringing again tomorrow) waiting for a phone call back from paediatrics to see if I can go to GP for melatonin (prescription only in NZ). Can't fault school tho only the red tape beurocrates who decides who can and can't get funding for things

1. I am specificaly thinking about starting up something like a center that will hopefully grow over time. I don't know what professionals I want to include in something like that but I do know that I will ask for certain qualifications when I do hire, sometime. Plus I want to create a better resource for people to find information, that is more accurate and more in line with personal growth than stagnant thinking.
However there are a lot of so called professionals out there that say they know alot about autsim but they really don't, most of what they learned has been from books. Not that this is bad because books can be great tools but when they only rely on research and literature and not really understanding what autism is and how it affects people is not good. A lot of professionals I encounter day to day really only care about there own power and the perceived good they are doing. But they should be doing more to help you out than they are.


Perhaps a good place to start would be, then, an information source. A compiling of on-line communities, a run-down on the different ideas out there (as much as you and I may not like it, each family is going to have to choose a direction for itself, but feel free to sell sell sell the drug free, parent-getting-to-know-their-child centered approach), personal stories that are positive (not in getting a "cure," but in discovering the gifts of AS and managing the negatives effectively), a list of local practitioners that seem to have a solid and positive understanding of AS, information on products that may be helpful (we here a lot of talk on this forum about weighted blankets, chew necklaces, etc - I had NO IDEA these things were out there), and so on.

There is so much information out there, and so much misinformation, and wading through it can be a chore. Wouldn't it be nice to go somewhere, ask a question, and have someone guide you through that information and help you find something that you believe will be helpful for your family?

You hit the nail on the head, old cliche I know, about one of the goals I have in asking the questions I ask. Compiling a list of information like you said would be a great resource to all parents and person on the spectrum.

So my next questions would be
Where do you go to get most of your information and what brings you to those particular places.

Plus how could a compiling of information be easily read and obtained for you, would things like searches help or quick breakdowns of research and things like being able to search who sells weighted blankets and having links to buy from the website or store.

And thank you for your responses they help me tremendously.

Not sure if I'm on the "right" track, but having recently just had my 10yr old diagnosed - and a list of things that "will be arranged" of the dx letter - I kind of feel lost?

This is a list of immediate things that would help me that I can think of

1. Should I be informing the school - I have anyway - wasn't going to wait for someone else to do it
2. What facilities are available in the education system to help our kids in the NT world?
3. Listings of where to get facilities - schools, doctors, clubs, WEBSITES like this one!
4. support networks for aspies and their family members younger and older
5. A direct contact at school - ie member one or two members of staff who communicate directly with the parents on issues
6. Contact with the school nurse to perhaps lead or guide me through.

For me personally, (let alone how my unique girl feels) it is a confusing time with so much information to deal with, and not really knowing how to tell the good or appropriate stuff from those that are not!