Saturday, April 24, 2010

Bad annoucement

Okay...this is a bit of a low blow by somebody (not sure who) but somebody has gone into my Twitter account and deactivated it. So, well, my new Twitter account is AutisticLady

Honestly, am I that disturbing that somebody needs to do that? To whoever did it: Get a life and you can't make me go away.


Interview with Liane Willey

I was delighted that Liane Willey, author of the book Pretending To Be Normal agreed to do an interview with me for my blog. Liane is a wonderful women on the autism spectrum who works to improve the lives of other families living with autism.

1) How did you handle finding employment and keeping it? Are there some tips you could share with other people on the Autism spectrum (and their families helping them) struggling with job issues?

It was very difficult for me to go to job interviews, but I forced myself to do what had to be done. Namely, I made resumes, practiced having interviews with myself in the mirror, and I made sure I had a nice outfit to wear to the interview so that my appearance was neat and appropriate. I cannot say this was easy. There were times I would put off going to the interview for days on end. The key to making myself go was to find a job I was qualified for. When I was 16 I was only qualified for fast food restaurant work so I applied, and got a job at, McDonald's. I applied for my position as a professor after I had my doctorate degree. I did not get every job I applied for and I was often terminated soon after the job. By the time I was in my late 20s, I knew teaching was something I was good at, so I decided to pursue only jobs where I could monologue or teach. My advice is simple: find what you're good at, pick an area you enjoy so you will stay motivated to do what it takes to obtain and keep the job, study hard and gain as much educational or practical experience as your budget will allow for, get experience even if it is as an intern or volunteer, and practice interview skills. After you do get a job, work with a job coach or counselor to make sure your social skills are of the sort your new career will demand. Finally, there is no shame in any job. I often took jobs below what I thought were my academic and experience level, but I learned something in each job, so no job was ever a waste of time.

2) What is the biggest issue facing the autism community today and how would you like it handled?

This is a tough question to answer. If I have to pick one it would be to reach the ASD affected minority, low socioeconomic and elderly populations with both ASD awareness and support programs. I would love the media to join forces and broadcast free ASD educational programs geared toward teachers, caregivers, families, and individuals. A network devoted to nothing but special needs would be great and our ASD community could have a strong voice and presence in this programing.

3) Do you have any tips for managing autistic mannerisms, like rocking, spinning objects, etc.?

I never try to break a stim or habit without having something in mind to take its place. When making a replacement habit, I try to find something that is very similar, but that may look less like a stim. For example, I like to rock, but I rock side to side, rather than forward and backward because it looks more natural- like a mother rocking a baby. And I still afford myself plenty of opportunity to stim as I wish, in private. Private may mean the back of a grocery aisle where there is no audience or a public bathroom behind the closed doors of the stall, but usually it means in my own home.

4) What can people on the spectrum and their loved ones do to keep them safe? How can a person on the spectrum figure out if a situation is "safe" or a person is "safe"? What are some red flags that a situation is bad?

I am not sure a person on the spectrum will ever be 100% able to stay safe and avoid bad situations. Our poor theory of mind and our inability to read non-verbal communications and judge hidden social curriculums make it nearly impossible to always judge a person's intent or a situation's risks. I do know that it is comforting for me to have a trusted person or two I can call the moment I feel like I might be close to something unsavory. I give myself permission to call one of my trusted friends the moment I feel unsafe. Regrettably, I still walk into bad situations, so I would like to refer readers to autism safety expert Dennis Debbaudt. His contact information is
Autism Risk & Safety Management now on FaceBook. Join us here:

5) When you're close to "melting down"; how do you handle it?

First of all, I had to learn by trial and error and many years of paying attention to my reactions, what would make me break down and how to avoid it. Now that I know what my personal buttons are, when I see the buttons are about to be pushed, I tend to go to the darkest part of my closet, close my eyes, shut out all noise, and concentrate on my breathing. If I don't' get myself out of the on-coming storm, I will surely get caught up in it and then I have to ride it out with either extreme amounts of anxiety, physical illness, or lots of tears.

6) What are some do's and not do's of dating? Is there any cautions you have? And what can a parent/caregiver do to help a person on the spectrum interested in dating?

In my perfect world, people on the spectrum would only date people they have been fixed up with by friends and family members! However, there are places and situations that are safer than others for making friends and building relationships. For example, don't toss a person with an ASD to a bar and expect the evening to go well. Family oriented centers like the YMCA rock climbing club or a local bowling league tend to be safer bets for meeting people who do not have ulterior motives in mind. That having been said, there are cruel people everywhere, so the person on the spectrum has to have a solid understanding of what constitutes good and inappropriate behavior and how to handle such behavior if it comes up. Remember that dating will often turn into something interpersonal, so don't underestimate the importance of sex education. Be direct in your discussions, leave nothing out. Discuss diseases, how they are acquired, pregnancy, the urban myths surrounding all the above, and the importance of knowing "no means no". Social coaching is a must in this area and at some point, I would bring in both males and females to talk as freely as possible about their issues, concerns, questions, etc. Let the person on the spectrum do as much self-analysis and questioning, and as much self-advocating and understanding as they can.

7) What is something about Autism that you wish everybody would know?
Yes. I wish people knew that everyone who has autism has a wonderful story to share. If people took time to really learn to listen to and learn from their autistic associates, I bet they would be surprised and delighted with what they learned from the person with autism.

8) Is there something you would like to tell parents/caregivers out there?

Take time for yourself. Shed any guilt you may have. Every parent/caregiver has moments of guilt over any human they tend to, so just know it's normal. Laugh as often as you can. Pick your battles. Know that things get better. Never underestimate the gifts your person with an ASD has. Keep the bar just high enough, and take care not to make it too low. Remember, the support you give is incredibly important and life saving. Without you, I shudder to think where folks on the spectrum would be.

Tuesday, April 6, 2010

Interview with an autism dad

Perhaps you've seen his many Tweets as TannersDad ; Tim Welsh is the dad of a kid with autism. He works tirelessly to increase autism awareness and is respectful even when we disagree. I asked him if it would be okay to ask a few questions for my blog, and he agreed.

1)What was it like when you first got the diagnosis of Autism for your son?

Tanner was "Officially Medically" Diagnosed at age 5... We had gone through Diagnosis of Apraxia of speech, Educational Diagnosis of Autism, PDD-NOS, and finally Autism. It was a process but we had to go through all the stages of loss. We were in denial, Angry, revengeful, grasping for justification and much more. I am still frustrated at the lack of help or explanation. When he was talking, Then got vaccines, & Lost his voice... the timing is suspicious....

2)What do you think the biggest issue surrounding autism right now?

Boy that is a tough question... I would say that the general publics apathy & inaction when it comes to Autism. It is right up there with the lack of services & Support. So many of the Autism issues are inter-related to current issues Health Care reform, insurance Reform, Respect, Restraint & Seclusion laws, Housing, Employment, & Need for answers.

3)What is something you wish other people would understand about Autism?

It is what you do not see that is the issue... These Individuals are some of the most healthy looking & Beautiful... But the stress, Strain , and need for help is immediate. Studies have show families dealing with Autism are under as much stress as those suffering form PTSD Post Traumatic Stress Disorder.

4)What do you wish autism organizations would do (or more of) ?

My dream & Vision is first & Foremost for all Autism Organizations to get on the same page... I started the twitter initiative #UWAC unity within Autism Community. We have much more that we agree on than disagree but sometimes arguments flood the airwaves. To me Awareness, Respect, Services, Employment, Housing, Human Rights, Respite, & Answers all need to be on the front burner.

5)What has helped your son the most?

Love from family. We have a great need for ABA therapy and pray one day that we will have the resources to provide that for Tanner. We are blessed that he has a personality akin to what I imagine Jesus to have. Calm, Happy, Loving... Just beautiful.
You can get in touch with Tim here:
Cell:217 260 3098
#HDTJ #APE #FeelAutismYet #FAY #AutismABC #TAhml #Truthfirst #MTHA #BFH #1in58 #autism

(Yes, he did give permission to give out contacts, don't worry!)

Through My Eyes - Thanh Bui

Monday, April 5, 2010

No, Age of Autism, autism is NOT like cancer

Amazed. Horrified.

These are both my feelings after a recent Twitter set of Tweets by the popular blog Age of Autism:
AgeofAutism: "Even if my girls WERE too old for an autism cure - I'd NEVER deny the possibility to another family. Would you? #AofA"
AspergersKitty: "@AgeofAutism My concern is how dangerous some "cures" are. I wouldn't get a cure myself;but if it was safe I wouldn't stop consenting others"
AspergersKitty: "@AgeofAutism Provided it's safe/science based; a cure is a deeply personal matter for the autistic individual and their family."
AgeofAutism "@aspergerskitty How dangerous is chemo for cancer? Risk/benefit based on severity of diagnosis. Of course safety 1st."
AspergersKitty:"@AgeofAutism Did you really just compare autism and cancer?! Wow. Well,not enough space here,but I will respond in my blog why that is WRONG"

Cancer is a deadly disease; autism is neurological condition that can cause both problems and benefits. I understand there are people severely affected by autism who need help. But risking death in order to treat autism is just not okay. Those with severe forms of autism are most in need of people's protection from dangerous therapies based on lack of scientific evidence.

It frustrates me when groups like Age of Autism and Generation Rescue have an attitude of promoting dangerous treatments. Of course they can say whatever they please, but ethically, there is a responsibility to protect those who cannot protect themselves. Both groups are in an incredible position of power by being trusted by parents. I wish I'd see them take a stand and say no to dangerous procedures. Just imagine how great it would be to see Generation Rescue, Age of Autism, Autism Society of America, Autism Speaks, and GRASP working together to get support services like respite, speech therapy, occupational therapy, communication devices, and other safe treatments; while taking a stand and saying NO, it's not okay to risk lives with procedures like chelation.

My heart aches when I hear about innocent kids undergoing dangerous treatment. I feel like if I say nothing; it would be standing by while a child is being abused. Because, that's what it is. Risking a child's life on a treatment like chelation is abuse. I know I'll probably get angry mail about this; but why is it okay to do things like this to autistic kids? People would get arrested for doing it to a neurotypical child, why is it okay to do it to an even more helpless child?

One can wish for a world where children are safe from "professionals" and nobody justifies risking their lives for improving a neurological condition.

One can wish.

Sunday, April 4, 2010

How to Spot the Signs of Autism

A great, easy to understand video on how to spot the early signs of Autism:

Happy Easter!

Have a great Easter everybody!