Monday, April 29, 2013

Tiny Grace Notes Celebrates 1000 Ausome Things #AutismPositivity2013

72 Ausome Things:

Steamengines dapples twinkles twirling light music sparkling trains water spirals hexagons airplanes sailboats lightrail trees cars ferries lakes clouds triangles logic dodecahedrons cats dictionaries diesels intermodal maps cranes hummingbirds motherboards laptops bubbles propellers canoes trails yurts books fiddles movies lakes bikes wheels encyclopedias globes mobiles art mixers metronomes clocks helicopters freighters semis poetry numbers letters dogs squirrels rivers leaves fish babies rocks paper sparrows octagons trucks taxis thesauruses dinosaurs multiples of twelve.

I can only write 72 of the thousand ausome things right now because I need to sleep, and sleep is one of them, the 71st.  My friends will write about other ausome things.

But for my part, I am saving the best for last: you.  You are ausome.


Thursday, April 25, 2013

Helping Your Autistic Teen In Transition

***Note from Ib: This was commissioned as a general tip sheet for an organization, but I also want to reprint it to here in case it will be of use to any of my readers.  It is about the transition of leaving school, and is a bit US-centric in parts.  Sorry about that; after I finish converging ideas for Dealing With Family Matters, I'll write an article about transition in general, not centered so much on US law.

Transitions of any kind are difficult for most people, and they’re even more of a challenge for Autistic people and teenagers, and now you are helping your Autistic teenager face Transition with a capital T.  This is the big one, and it is complex.

School Transition Services
Starting from the age of 14, transition planning must start in schools, by law.  Note that in some states, it must actually be implemented at this time, whereas in other states the schools have until age 16 to implement the planning that began at 14.  Unfortunately, schools do not always seem to be aware of this, and it can be left to parents to keep track.  (An Autistic person who is also a Special Education Professor and family advocate and has sadly seen this all too often is writing this tip sheet.)  So: the first thing to do is make sure the school is on top of the situation at the correct age.

Post-School Services
One of the things that are of paramount importance is to find out how, in your area, services are obtained once school is over.  In all likelihood there is a gigantic waiting list and a byzantine system.  Learn the system early and often; sign up for the waiting lists right now.

Now, What Are Some Specifics To Think About?  For living:
§  Where to live
§  Skills for living (practical)
o   Self-advocacy skills
o   Cooking
o   Communication using voice, sign, PECS or AAC as necessary
o   Transportation
o   Budgeting
o   Keeping safe
o   Laundry
o   Etc.
§  Skills for living (social/emotional/sensory)
o   Self-advocacy skills
o   Dealing with neighbors/roommates/landlord
o   Communication using voice, sign, PECS or AAC as necessary
o   Coping with potential noise pollution or aromatic overload, etc.
o   Making friends and relationships
o   Keeping safe
o   Etc.
For working or college:
§  What type of work to do or college to go to
§  Where to work or go to college
§  How to get a job or get into college
§  Supported employment/job coaching/training/other work/community college/university?
§  Skills for working/school (practical)
o   Self-advocacy skills
o   Work-dependent skills and the ability to learn them
o   Work-ethic and the ability to signal it
o   Communication using voice, sign, PECS or AAC as necessary
o   Etc.
§  Skills for working/school (social)
o   Self-advocacy skills
o   Knowing how to be a colleague or student
o   Communication using voice, sign, PECS or AAC as necessary
o   Learning where/how to access the hidden curriculum of a workplace or campus
o   Feeling confident choosing contexts for various activities
o   Ability to recognize and regulate needs
o   Keeping safe
o   Etc.

These are just a few of the things to keep in mind for transition planning in the formal sense, to get you started.  It’s not exhaustive and it’s also not mandatory.  Plenty of people don’t choose to do all or any of these things for cultural, personal or other reasons.  There are also informal aspects and arrangements to consider.

In one example, because the employment prospects were so unpromising and the wait-list for services so long and also unpromising, a father known to this writer positioned himself on his beautiful historic town’s Chamber of Commerce, giving himself ample time to make the connections needed to make sure his son had a well-fitting job opportunity despite being a person who does not necessarily adore job interviews or such like.  As you know, parents do what they must.

You also know that a lot of what you will be helping with in transition is the emotional and sensory turmoil that comes along with changes, and these changes are all big and important ones.  You may be feeling shaky yourself now, because this is not the easiest of times, but rest assured: you do not need a tip sheet to know how to be there to support your teenager as only a parent can.  You know how to listen and to love unconditionally, and that is the most important thing.

Tuesday, April 23, 2013

I’m Autistic. Should I Self-Disclose?

I’m Autistic. Should I self-disclose? 

It depends.  There are pros and cons to self-disclosure, and a lot has to do with the context you are in, and how much you trust those around you.  This can be hard to figure out.  This short piece will list some potential pros and cons to think about when deciding about telling people in a particular place and time about your Autism, and also give some tips about how to figure out how you feel about your context.

This can be scary territory.  Remember, self-disclosure is a very personal topic.  There is nothing to be ashamed of in being Autistic.  There is also nothing to be ashamed of in keeping yourself safe.  It’s a balancing act.

If you have read this blog before, you know that it is written by someone who spent the early professional years mostly “in the closet” (trying to not let anyone know, with various amounts of success) and then recently decided to widely and deliberately self-disclose in all sorts of public, so therefore has comparison knowledge about both situations.

Six Good Things About Disclosing
1. You don’t have to worry about people finding out because you are in control of them finding out
2. You get a chance to educate people about things you need, or about Autism in general, instead of listening to people just make assumptions all day
3. You can access legal protections (you can get these by disclosing only to the HR office, or the appropriate authorities; you don’t have to tell everyone)
4. It is easier for others in the community online and in real life to find you and make friends
5. You can feel a sense of pride in who you are, and hold your head up high, and not hide
6. You can march in parades and join solidarity groups like ASAN, which gives you more power in life!

Six Not So Good Things About Disclosing
1. Some ignorant people will suddenly act like you are automatically incompetent and talk down to you
2. These same types of people might decide to leave you out of things if they are not already doing that
3. Other people might be afraid to approach you or ask you questions because they are nice but they don’t know what Autism is and they are scared of new information
4. Some people believe false beliefs about Autism, and they might apply these to you
5. Explaining about things too much can make you kind of tired
6. Other well meaning people who are nice but don't understand might make you do more things because they need a token disabled person, which also makes you tired

You might notice that the good things and the not so good things are sort of equal in weight, so they don’t automatically make the decision easy.  This is where the context and people come in, but people are hard to predict.

So to figure this out, you really have to think about yourself.  Here is a grid about what you might think when you read the above lists that can help you decide.  You can use it to read the Pro and Con list again, and see which reaction matches yours the most.  Then, see if the answer that the grid gives you feels good.  Remember, there’s no right or wrong, there’s only your choice of what is comfortable.   Also remember you don't have to tell everyone there is: you can make this choice in stages. And you don't have to tell anyone.  It's up to you to do what you want because you are you and you are the one who chooses.  When I finally told the world, I was very glad I did, though, just to let you know one person's experience.  You can sort of tell because of who I am on the rest of this blog that the positives outweigh the negatives, for me.  Best of luck to you on your own journey!

***Note from Ib: This blog post and the next are general questions asked of me in general and answered more widely.  I am working on the answer to "Dealing With Family Matters" who has a very delicate and important personal question that has been in the hopper and it's taking me a while to actually work it out.  DWFM... I am asking for a lot of family advice and also input from wise people I know on your dilemma and I hope I can help!

Tuesday, April 9, 2013


Lately I have heard from some new parents (what I mean by that is really parents of kids more recently diagnosed) that they had felt like they wouldn’t be able to find other people on the web they could relate to because they didn’t agree with or want to hear doom and gloom and negativity.

I’ve also recently heard from some Autistic colleagues that they are sick and tired of being berated, silenced and otherwise treated with disrespect “by parents.”  I could relate to the feeling, but it’s that “by parents” thing that got me thinking.

This is when I remembered that I hadn’t yet written about my visit to Hirsch Academy in Decatur, Georgia.

Most people’s parents are not like the small handful of loudly vocal people who show up repeatedly to write unkind things to and about Autistic adults, and sometimes even their own children (I won’t get into that, because it’s really too triggering).

Because I am a person who prepares special ed teachers and doc students for a living, I meet a lot of people, and a lot of them are parents of kids, and a lot of the kids these parents have are kids with autism.  I get to know them over time, and see the wonderful work they do as pre-service teachers, and often keep in touch with what they are doing after they graduate.  These are good and loving people, dedicated to life-long learning.  This is my general background knowledge of other people’s parents.  This is hundreds or maybe by now a thousand-odd of people, not just a loud handful.

Cut to my experience at Hirsch, which really drove this home so much it brought tears to my eyes.  Shelley Carnes and Leslie Smith there who run the homey, inviting little school brought me, Landon Bryce and Brenda Rothman to come and speak for the inaugural session of their “Our Voices” series, which they put on in the city of Atlanta and opened to the public for all who are interested in Autistic and allied viewpoints.

Shelley and Leslie are parents, and a lot of the teachers were too.  Many of the parents came to see us at the school before the event, and so did the teachers.  They asked questions, which also helped us fine-tune what to talk about in the speaking portion.  They clearly cared about the answers and believed we were human beings worthy of respect and even honor.

During the large talk, picture a giant room full of parents: a giant room or a small auditorium.  Like a large church they numbered.  So it wasn’t a stadium, but the audience was plentiful enough that I started out calming myself down using theatrical preparation breathing.  And then this happened: This giant room full of over a hundred parents emanated so much open-mindedness, and—if this is not a word, it should be—open-heartedness that I felt perfectly comfortable telling them to feel free to ask me anything.

This is what parents are really like.  Parents of Hirsch Academy, you can ask me anything you want, whenever you like.  And I hope I can come see you real soon.  And I hope you come to TASH, which is in Chicago, where I live.  Much love.

So for everyone else who is having a hard time getting beyond the really super vocal handful? Hang in there, stick around; I have some wonderful people to introduce you to.  Parents like yourselves, the kind I’ve observed (from the honest and sensitive questions and comments) who read this particular blog.

Because check it out.  All those wonderful, loving, open people in Georgia?  That was just in Georgia.  And only in one part of Georgia.  It’s a big, wide world, full of love and compassion and sparkles on the water and dapples in the trees.