Nothing For Us Without Us - 2016
In 2015 I ran a survey designed to get real life information from autistic college students. Information that high school students and their families can use to
- Determine what skills still need work
- Get ideas on how to deal with common issues in college
- Get information on what college is really like
- Promote attending college
The survey results were not only published here on this website but in several publications including a recent issue of Autism Parenting.
While there were 58 responses last year (a great start I thought) I think that running the survey during the summer didn't allow me to reach as many students.
As a result I am running the same survey again this year, but during the school year. I would like to have 100 survey responses.
Click here to take the survey if you are an autistic college student.
The survey has the following 6 questions:
- What supports do you receive and how does it compare to high school?
- Where do you live (home, dorm, apartment) and why?
- How do you keep track of classes and assignments?
- How do you motivate yourself?
- What do you do to manager your stress?
- If you could go back in time to give a piece of advice to your high school self, what would it be?
The survey is anonymous.
Click here to take the survey if you are an autistic college student.
Please take a moment to share this article on Facebook, Twitter or other social media.
Resources
There are a lot of resources out there for autism,
thousands of websites and products designed to help are available.
Sound a bit overwhelming? Yea I thought so too.
In an attempt to make sense of it all I have started this resource page. Listed here are some of the sites and products that have been recommended to me and other parents of autistic kids. I am primarily listing things that are helpful to tweens, teens, and young adults.
If you have anything you would like to see added to this page, please email me at darcottefreelance (at) live (dot) com.
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If you click here it will take you to Amazon and I will get a small commission no matter what you purchase.
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Helpful Resource Links
Here are the resources I have collected so far in alphabetical order by category. I do not get any commisison or payment for promoting these links except where indicated with a *.
Alert Bands/ GPS Devices
Brushing Teeth
Surround® Toothbrush (Pack of 4)*
Chewables and other oral motor products
Clothing
Communication Options for Non Verbal Individuals
General Products
Motivation and less screen time:
Aspergers Experts - these are 2 young adults with Aspergers who have a lot of great advice
Service Provider Search
Social Stories Creator App
Toys
Visual Schedule Creator
Winter Gear
Tired of Arguing With Your Teen?
Getting our autistic kids to do what we want them to do, when we want them to do it and in the way it should be done is never easy, but sometimes it is downright impossible - or at least it feels that way.
We used to spend more time every day arguing with our daughter trying to get her to do a simple task than it would take to do the task.
Help from a professional
Luckily she had an autism program director at school that is an angel, Miss C. She was able to sit us down and explain that our daughter just wasn't going to behave the way we wanted her to unless we changed our behavior.
We were so focused on her behavior that we lost sight of her as a person. We saw her bad behavior as a reflection of our parenting skills and when we couldn't fit her round self into our square peg we just got angry at her and resentful.
Miss C was able to show us how she worked with our daughter at school and how we could use the underlying theory to create methods that worked at home.
· Motivation - What rewards did our daughter actually want - not just what we thought she should want?
· Teaching - How many steps did a task require? Did we break the steps down? Did we provide a visual cue?
· Prioritization - Why do chores/ homework need to be done at a certain time? How does it effect others when things are not done according to the set schedule?
· Communication - What needs to be done and why, not 'Because I said so'
· Compromise - Meet her where she is and help her grow towards the goal in her own time.
Armed with this knowledge we were able to change the way we approached everything. With that change in approach her behavior changed. We discussed things ahead of time, before the heat of the moment overcame us. We prepared ahead for teaching new skills and building on what she had mastered.
It wasn't always easy - there was still some trial and error on our part and some growing pains on hers, but eventually we have managed to find a way to meet in the middle. She has learned how to communicate what she wants, and why. We have learned how to ask the right questions and together we are able to find solutions that work. This focus on a process instead of on the person has changed everything.
You Are Not Alone
We feel so blessed to have a child that has come so far since her diagnosis over 10 years ago. When I read some of the posts on Facebook and in the forums I frequent I wish I could share my insight with the parents of those posts. Of course I don't, as I don't know what their specific situation is and we all get enough unsolicited parenting advice as it is.
Many parents of young children feel so overwhelmed and are scared of what the future holds. I want to tell them that the child they see now is not who their child will be in 5 years or 10 years. We all learn and change over time, and so do our kids. They don't stop learning and changing when they are teens or even when they are adults - I think a lot of us forget that.
Having said that, I feel called to try and make a difference. Sometimes a fresh pair of eyes can provide some insight that allows us to make real changes. These changes can lead to progress we never thought would happen. I know that I can't give advice that is specific enough in a blog post, Facebook post or email so I have decided to do something different.
Get on the phone with me for free for 30 minutes.
Over the next couple of weeks I have decided to offer 5 - 10 free consultations. I want to understand your situation and provide some actionable perspective - some real-life advice that you can use to make your family life better.
Again, this is absolutely free - I am not going to be selling you anything.
All you ha
All you have to do is contact me using this link.
Tell me your biggest frustration right now. I'll contact you and we can set up the call.
Simple enough?
Good. Together we can find a solution to your biggest challenge. So write that messaget now.
Do You Have a Favorite Website to Share?
I wanted to ask for your help on building a new resource page on the website.
I already have a list of resources I have gathered from Facebook groups and other places, but I am sure that you have some to add to the list.
Here is what I have so far:
Motivation and less screen time:
Autism Experts - http://www.aspergerexperts.com/
Holiday cards the promote benefit autism
http://www.cardsthatgive.org/…/h…/autism-spectrum-disorders/
Emergency Chat App for Non Verbal Individuals
https://play.google.com/store/apps/details…
Job/ Business
http://usa.specialisterne.com/midwest/
Clothing
http://www.independencedayclothing.com/
Chewables and other oral motor product
http://www.arktherapeutic.com/new-arrivals/
Service Provider Search
http://www.jasonsconnection.org/
Now I am asking for your help - if you have any websites you would like to see added to this list, please email them to me at
dmarcottefreelance (at) live (dot) com
I plan to launch a new resource page by October 1 - so please send me your suggestions before Friday September 25.
What Do I Do Now?
Over the next couple of weeks I'd like to do something a little bit different. I thought it would be fun to ask people what they wanted to learn about.
If you could take just 5 minutes and tell me what is the single biggest challenge that you're struggling with in parenting an autistic teen or young adult…If you could take 30 seconds to tell me what that is it would a) mean a lot to me and b), most importantly, I'll be able to use that information to gear my upcoming emails toward topics you specifically want to know more about.
Please use the link below to take the survey.
Thank you so much for your response.
P.S.
If you missed them all of the articles with advice from autistic college students are live now under the Advice from Autistic Adults tab.