Survival guide for families growing up with autism

What is self-advocacy, anyway?  It’s a complex collection of behaviors including speaking up for yourself and your rights, asking for what you need, negotiating, compromising, using available resources to get your needs met, and, perhaps most importantly, being able to explain your disability to others, either verbally or using visual tools such as a written or pictorial card. As parents, it’s natural for us to advocate for our children. As infants and young children they were unable to advocate for themselves and it was all up to us. Now, though, we want to retire from this job. But are our children ready to take on advocating for themselves? If not, when should we start passing the advocacy baton?

When it comes to self-advocacy, it’s never too soon to start working toward independence.  Julia writes that she’s teaching her students self-advocacy and problem-solving in elementary school. We can allow toddlers and preschoolers to make choices about what they will wear or eat, within acceptable guidelines.  But chances are your children are already teens or young adults. You may only now be realizing that they did not develop self-advocacy skills naturally as they matured, the way many of their neuro-typical peers did. So, how do we start now?

The answer is as individual as your child; start where she or he is right now.

Is your son nonverbal? Make sure you have the right augmentative communication device for him. If it has the option to program in phrases, questions or answers, make sure the device is programmed to say the specific phrases your child most wants to communicate.  Also, listen to the voice on the device; whose voice is it Your son probably does not want to sound like his mother or speech therapist. You might want to ask the drama teacher at your local high school to hold auditions, and let your son choose the voice he wants to speak for him.

Is your daughter high functioning in some ways, but immature when it comes to making decisions or solving problems? Provide needed guidance while respecting her intelligence and individual preferences.

Does your son seem to be permanently attached to his computer, or your daughter to her smart phone? Are they uncomfortable with verbal conversations or face-to-face interactions? You may find it’s easier to communicate about the transition process via email or text rather than face to face.

Wherever your child is, that’s the place to start. The Autism Speaks Transition Tool Kit says, “The transition process will take time. It is important that you work with your adolescent to provide the communication, self-help and self-advocacy skills that he or she needs in order to be an active participant in the process.”

(Next post: Self-Advocacy 3 – Introducing Self-Advocacy)

We all want our children to be able to self-advocate: to speak up for themselves and their rights, to stand up to those who would bully or use them, to know how and where to ask for help when needed. In general, to go forth into the world as adults without needing a parent or teacher to negotiate and smooth every bump in the road for them.

We know they’re good enough; most of our children with autism have a strong sense of integrity, a basic, innate goodness of spirit, and a heartfelt desire to do the right thing.

We may even know they’re smart enough; some of our people on the spectrum score much higher on IQ tests than many of their peers who seem to have no difficulty making their way in the world.

But we also know that, unlike typical young people their age, our young adults are seldom prepared to make important choices, to follow through on necessary steps to reach a goal, or to cope with those unexpected surprises life has a tendency to throw at us.

Most of us have assumed that our children would gain these skills over time as they mature, much the way their typical siblings and classmates do. By the time we realize it’s not happening automatically (meaning without direct instruction from us or their teachers) it’s a little late in the game.

But it’s not too late.

We’ll be discussing some of the things we, as parents, can do to help our children learn to advocate for themselves. If they are still in school, we’ll talk about some ideas to bring up at the IEP meeting regarding transition and self-advocacy. Wherever your child is right now along that path (or even at the very beginning about to step or be pushed onto the path) there are steps to take.

In the meantime, leave a comment, a question, or especially tips for others in our shoes – what was most useful in helping your child learn to stand up for himself? What advice or book or guidepost can you share? Don’t keep it to yourself.

(Next post: Self-Advocacy 2: Where do we start?)

Link to Aspergirl

It’s about time I added a link to The Potentially True Adventures of Aspergirl at aspergirl.wordpress.com. She’s included a number of links in her most recent post, well worth navigating through. Check it out!

Also, here’s the logo for A.S.P.I.E.S.

Autism Spectrum People: Inspiring, Educating, Supporting

Autism Spectrum People: Inspiring, Educating, Supporting

www.aspiesonline.org

Do you have any favorite links to share? Let me know. I’m always interested in learning more resources that might help our kids on the road to independence.

Transition Tool Kit

I just got my Family Services Transition Tool Kit from Autism Speaks, and I want to encourage you to get yours, too. It’s got a wealth of information, with chapters on:

  • Self-Advocacy
  • Why do we need a Transition Plan?
  • Community Living
  • Employment and Other Options
  • Postsecondary Educational Opportunities
  • Housing
  • Legal Matters to Consider
  • Health
  • Internet and Technology
  • Getting Organized
  • Conclusions & Resources

Isn’t this just what we need – just what our kids on the spectrum need?

(Okay, reality time –  ALL young people need this kind of practical information on adult life, not just the ones diagnosed with ASD.)

I’m about to get into it, jumping right into the first chapter with “Self-Advocacy: Where Do I Start?”

Where I think you should start is getting one of these free kits for yourself. Just go to http://www.autismspeaks.org.

And, while you’re at it, leave a comment as long as you’re here. There is a lot of wisdom and experience out there, and this is a place you can share yours. What are you doing for your child’s future transitions? Or what questions do you have, or concerns, that another parent might answer? Leave a comment or question, and let’s get a dialogue going.

Transition

Last night I attended a meeting of SPA (Support for Parents living with Autism /Asperger’s.)  We were all parents of children on the autism spectrum, with our children ranging in age from 6 to 26.  We all shared a common concern for the future. What’s next for our children, after school and IEP’s are a thing of the past? We talked about the need for a group home program that was designed with our unique people in mind, such as their need for privacy (no bunkbeds or communal bathrooms, please,) and sensitivities to sound, bright light or perfumes.  They would need mentoring and specific instruction  in social skills, job skills, and activities of daily living such as cooking, housework, time management and financial planning.  But where can we find these programs? Not around here, apparently.

Those of us who read Parade Magazine Sunday April 3, 2011, saw the cover article on this same topic:  “Autism’s Lost Generation,” with more similar stories at http://www.parade.com/health/autism/featured/autism-burns.html

If you’d like to read about my son’s non-profit in process, check out www.aspiesonline.org. We’re hoping some day to apply for grants to start A.S.H. (Asperger’s Supported Housing.)

Also, you can download a free Transition Plan from autism speaks, at the following link:

 http://www.autismspeaks.org/community/family_services/transition.php

If you know of more resources, let me know. I am happy to share them; the need is real and pressing, and the problem won’t go away by itself. By working together and sharing ideas, questions, answers, links, success stories and support, we can make a difference.

If you are reading this blog, you probably already know something about autism spectrum disorders.  You know that at least 1 out of every 150 children are diagnosed with autism, and the numbers are growing daily.

You know that these children usually have challenges with communication and social interaction. They often have unusual, repetitive behaviors or interests, and they may be more strongly affected by sensory information than their typical peers. 

 In spite of these traits many share, each child with autism is unique, as different one from another as an other two children, which is why they say, “If you’ve met one child with autism, you’ve met ONE child with autism.”

But, if you have or know a child with autism, then you also know one thing they all have in common, in the best of all possible worlds:

Children with autism will grow up.

There is a lot of attention on treatments for children with autism, with over a million websites dedicated to this. (Seriously, I am not exagerating. I just did a search on “children autism treatment” and found 1, 030,000 sites.)

But this blog is about what comes next.

How do we help them transition from high school to college or jobs? How do they take that gian step from living at home to living independently? How will they fare when transitioning from IEP protections to the “real world” out of school? These are the difficult questions we should be asking, and it’s never too soon to start thinking about their future.

So, do you have tips to share? Questions to ask? Or just want to chat with others who understand where you are coming from? Let me know.

Wendela