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 http://www.autismriskmanagement.com
Email: ddpi@flash.net
Autism Risk & Safety Management now on FaceBook. Join us here:
http://www.facebook.com/pages/Autism-Risk-Safety-Management/247829751467?ref=mf


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.

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
http://www.causecast.org/member/tanners-dad
http://www.twitter.com/TannersDad
http://www.linkedin.com/in/tannersdadtimwelsh
http://www.change.org/profiles/tannersdad
http://tinyurl.com/pfwpf7
http://www.autismone.org/users/tim-welsh
http://www.facebook.com/timothy.welsh1
http://tinyurl.com/m9r8ws
http://bit.ly/3tnFHa
#HDTJ #APE #FeelAutismYet #FAY #AutismABC #TAhml #Truthfirst #MTHA #BFH #1in58 #autism

RealTannersDad@Gmail.com
http://www.floral-n-flair.com

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

Autism Women's Network

There's a great resource out there for anybody concerned with issues of women on the autism spectrum. It's called the Autism Women's Network. I asked Sharon daVanport; the AWN's Executive Director &
Radio Show Host; if she would mind answers a few questions. She was more than happy to:

How would you describe what the Autism Women's Network is?

Our mission is to provide effective supports to autistic females of all ages through a sense of community, advocacy and resources.

The Autism Women's Network is a networking community of autistic females, their families, friends, and supporters who can share their experiences amongst a diverse, inclusive, and supportive environment. Our website publishes wide variety of articles relevant to the autism community as a whole. Some of the articles are original stories and others are contributed to AWN from our members who originally posted them on their blogs or web pages. Please let us know if you are interested in submitting a story to AWN; we are always interested in reviewing material from Contributing Writers. You can reach us at: AWN Contact Form.


What inspired you to create the Autism Women's Network?

With a diagnosis of Asperger's, I made most of my initial contacts with the autism community through primarily Asperger's Groups. For the better part of 2009 I was continually challenged to raise awareness for all females on the spectrum as opposed to only those with AS. It didn't take me long to realize that I was better suited for a more inclusive environment.

In addition, an overwhelming consensus from females on the spectrum was their desire to be part of a non-judgmental networking community. They believed it was essential if they were to continue moving forward toward solutions and answers pertaining to matters specific to females. We looked hard at the issues which had not been working in the past, and we developed a strategy to move forward in a new and positive direction.


You must be very excited about the official launch of the forums! Who would you encourage to join the forums?
Most definitely females on the spectrum. In addition, family members, friends, educators, psychologists, and anyone in a supportive role to females on the spectrum.

Typically the males who join will pop over to the forum & say a quick hello with a brief introduction. It's nice to have a show of support from others in the autism community who may not intend on utilizing the forum personally, but will take the time to send their encouragement and well wishes our way.



What kind of topics are discussed on the forums?

AWN Forum topics are designed to inspire meaningful discussions which focus on issues relevant to females on the autism spectrum. It is our goal to successfully accomplish a portion of AWN's mission by building an interactive community whereby these discussions can take place.

Some of the forum topics are: Ask a NT, Special Interests, Art Gallery, Potpourri, Parent's Palace, Bullies and toxic People We Encounter, and many more. A few more topics which cover discussions on food, autism news, and relationships are:

Bon Appétit Share your favorite recipes, cooking tips, GF/CF info., & all things food related.

Extra! Extra! Read all about it... Autism news around the world.

Relationships A place to share your experiences, advice, & suggestions regarding family, dating, friends, & coworkers, etc.


An new addition which is coming soon to our forum is E-Mentoring. This will be under the leadership of AWN's International Director form Australia, Katharine Annear. E-Mentoring will give people the chance to have one-to-one support, advice and guidance from a volunteer who is independent from their ordinary life.

E-mentoring allows mentors and mentees to keep in touch by having conversations online, through a website. The mentoring relationship is facilitated by a safe and stimulating web-based environment (AWN Forum) which allows mentors and mentees to:
• Post messages
• Share information
• Discuss news items
• Access resources


** We are finalizing details on another Discussion Board for the Forum which will address issues of domestic violence, abuse, and the vulnerabilities of females on the spectrum as it pertains to these serious matters. Stay tuned for these additions to the Forum coming soon.

What is your online radio show about?

AWN Radio allows our organization to keep the lines of communication open pertaining to autism news, hot topics, authors, parents, educators, and individuals on the spectrum who come from all walks of life. AWN Radio allows us to reach a larger audience with participation from our listeners via the chat room and phone lines.

Though we strive to keep our programming consistent with our mission, we aren't exclusive to topics pertaining to only autistic females. We definitely have a diverse guest list which include males, females, autistics, and neuro-typicals.


Do you have any events coming up?

AWN is currently planning a few community events for April during Autism Awareness Month. Details will be posted on our website just as soon as the events are finalized.

Several AWN Directors will be speaking at conferences, workshops, and support groups throughout 2010. The Autism Women's Network will also be in attendance at numerous autism functions for networking purposes throughout the year.


Considering the statistics of only 1 in 4 autistics being female; do you think autistic women's concerns are taken seriously?

I believe we are slowly making progress in this respect; however, it is undeniable that we still have a long way to go.

AWN is dedicated to educating others about the unique qualities specific to autistic females. Recognized experts agree that furthering our knowledge specific to these issues will lead us to a greater understanding of the spectrum as a whole.

It would therefore benefit all of us to heighten awareness with regards to these matters. AWN is dedicated to keeping the focus on matters specific to females on the autism spectrum, and we extend an invitation for our community to join us.

Sensory Processing Disorder: Not Just Spirited book giveaway and interview

Due to unexpected move and low entry count; this giveaway has been extended until JUNE 1st, 2010. Thanks for your understanding!




Today I'm delighted to bring an interview and giveaway from Chynna T. Laird, the author of "Not Just Spirited: A Mom's Sensational Journey With Sensory Processing Disorder". When I first found out about the book, I was interested, being as I myself have sensory issues and many on the autism spectrum do. Although my issues are related to Autism and Septo-Optic Dysplasia, I enjoyed reading the book. One thing I loved about it was it's 'real' but hopeful; and never suggests anything that could harm a kid. Anyways, on with the interview! (Giveaway details at end)

1) What inspired you to write "Not Just Spirited"?

Not Just Spirited started off as journal entries. I’ve always been someone who journals away anxieties or worries or simply to get thoughts down on paper. When you go through something where people around you either don’t ‘get’ what you’re saying or aren’t listening, you have to have a positive way to work through those emotions or they’ll eat you alive.

Whenever we hit a frustrating point I thought. “You know, there just have to be other parents out there going through this stuff. And that’s just not fair!” I swore that once we got over our major hurdles, I’d do what I could to help other parents get to the information they needed. That’s when I put the journal entries and stories into a book form. Our story isn’t the same as other peoples’ are—it’s our unique experience. But the emotions we felt as parents are fairly common—frustration, isolation, worry, stress, not understanding what was happening to our baby, etc.

If anything, the book can help validate those feelings and, at the very least, inspire parents to keep going on their path…to keep moving forward.

2) What were some of the signs of Sensory Processing Disorder you noticed?

As you know, there are many symptoms and no two children show the exact same ones. And it wasn’t until much later that we figured out what her odd behaviors meant. When we first brought her home from the hospital things weren’t as noticeable but she startled easily, cried a lot, turned her head away from us when we spoke to her and fussed when we held her in any way other than laying her on top of a pillow and walking around with her.

By the time she got to three months old, she cried most of her day. She was a terrible sleeper because every tiny noise woke her up. She needed to be in constant motion and not just gentle rocking. We had to go full force, almost like the motion where you’d be swinging them to toss them onto their bed or something soft, you know? As she got older, her signs got stronger:

she covered her ears all the time, even when noises weren’t that loud (eg: diaper tabs)
she gagged around new smells or actually smelled things that shouldn’t be smelled (eg: clothes, cooking utencils, etc.)
she fought us with every single hygiene task, like bathtime, getting dressed, brushing teeth or hair
she avoided playing with toys that were noisy, flashy, played music, popped out at her, felt funny or smelled.
She avoided playing with other children or people.
She was clutzy, held things too tightly, broke things easily (I can’t count the amount of crayons we went through!), or didn’t hold things tightly enough.
She often lost her balance or tripped on things that weren’t there.
She often scratched at her skin or eyes, pulled on her ears or nose, hit herself in the head, pulled out her hair, and actually tore clothing right off her body.

Later on, her need for routine was so rigid that she had to have everything in an exact place or she freaked out until it was. If we missed a step in a usual routine, she couldn’t go on until we re-did that task. Her sense of touch was so sensitive that it affected what she wore, who could come near her, what she ate and what she played with. She couldn’t seem to get her hands to do things the way she wanted them too (using a fork or spoon, doing fine detailed crafts, writing or games with tiny pieces.) And she needed visual cues or pictures when you taught her something new or explained something to her or she didn’t seem to ‘get’ what you were talking about.

It wasn’t the quirks she had that made us wonder. It was the severity of them, the duration of her fights when things bothered her and the fact that one day something that bugged her to the brink of a fit lasting hours one day didn’t even seem to phase her the next—some days it was hour to hour!

I was so relieved to finally figure out what it was so we could build from that understanding.

3) What were some solutions you found that worked?

It took a long time figuring this out but what finally worked was exposing her to things. Honestly! Now, I’m not saying we shoved her hands into pumpkin goo or made her touch shaving cream right off the bat! We learned that slowly exposing her to sensations then giving her the tools to cope with how those sensations made her body felt was the best solution for a girl with such a high sensitivity level and such a wide range of sensitivities.

Some days she still avoids things, which is fine. But we always encourage her ‘just to try’ then guiding her to a safe place to calm down.

Things that worked for Jaimie are frustration balls (we call them “squeezy balls), fidgets, chewy toys, hammock swings (we have three different kinds of swings to work with what her needs are at a given time), headphones, textured cushions, mini-tramps and deep pressure massage.

Another form of therapy that worked for Jaimie was Integrated Learning Systems, or iLs, incorporated into her SPD OT. Most importantly was sticking to a regular Sensory Diet, including balancing out her nutritional needs, and maintaining her routines.

We also have A LOT of calendars in our house that we use to work Jaimie through upcoming events, pictured charts to work her through new tasks and stickers for EVERYTHING to put up on calendars. It’s amazing how little things like that make such a huge difference. When she knows something is going to happen and understands the steps involved, she handles it so much better.

4) What did you try that didn't work?

Play Therapy worked with helping Jaimie learn to use play as a way to communicate because for the longest time, she wouldn’t communicate with us at all. She didn’t even try speaking until she was way over three. We realized later on that was because communicating with us meant we had to do it back to her and she wasn’t always able to handle that interaction. But after a year, it stopped working. It was because there was no focus on her SPD needs.

In home therapy was great with initial assessments and stuff but that wasn’t the right choice for Jaimie. There was no separation from her therapy and her safe place, you know? Once we chose therapy outside of our home she was much more receptive to practicing her Sensory Diet.

Psychiatric therapy and drug therapy were suggested right off the bat. Of course, they were just focusing on her behaviors, not the underlying causes of those behaviors. We were told to put Jaimie on anti-anxiety and anti-depressants when she was only three years old! We aren’t ‘anti-drug’ and know that it works with some kiddos who have additional problems but we refused to use drugs for a disorder when we had no idea how those drugs would affect her nervous system. We filed such treatments as a last resort after trying other holistic approaches.

‘Sterile’ therapies where Jaimie had to be in a hospital environment or ‘observed’ by several professionals all at the same time didn’t work either. Jaimie reacted best to one person in a warm environment working with what she was comfortable with then slowly introducing her to new things.

5) What were some reactions by doctors and professionals to the sensory problems?

This is a great question. In the beginning, all we wanted was for someone to just listen to our concerns, tell us what was going on then put us in the direction to figure out how to help Jaimie. But people weren’t understanding our concerns. We were told that she was ‘just spirited’ or ‘testing her boundaries’ and that everything would work out. It never did. It wasn’t until Jaimie had a sensory meltdown so severe that she injured herself, me and her baby sister at the time (not purposely but when you’re throwing yourself around with your eyes screwed shut and screaming, you don’t look around you.) that our pediatrician finally got on board with us. He’s an amazing doctor, very supportive (now) but it was a long, frustrating road.

After her initial assessment by an occupational therapist (OT), we were guided to a local community resource. At first she dealt mainly with a Play Therapist but the psychiatrist who headed Jaimie’s case was very “pro-drugs” and tried convincing us to consider drug therapy. We wouldn’t. She diagnosed Jaimie with severe anxiety (Separation, General, Social anxiety and obsessive-compulsive disorder, OCD) stressing that for a child with her level of anxiety, she needed help in order to focus on the therapy at hand. We kept refusing.

After a couple more years, we found out about a fantastic SPD clinic here in our city (YAY!) and decided we were going that route. The psychiatrist wasn’t happy about our choice. She felt that Jaimie’s anxiety hadn’t gone away the entire time she’d been at the clinic and that if we ignored her anxieties, she’d only end up getting worse. Her exact words to us were, “Jaimie has severe anxiety, Chynna. Yes, she has sensory issues and the anxiety and those issues seem to work hand-in-hand—each one affecting and intensifying the other. But those SPD OTs only see the child through sensory lenses—everything is because of SPD. At some point, you will both have to realize that your child has a mental illness and that you need to get her proper care. Just be open-minded to drug therapy.”

Let’s just say that was the last session we had there. The point of me sharing that with you is that parents need to see their child as a whole and be sure that whoever treats their child sees her as a whole. If you don’t meet every angle of your child, she isn’t going to thrive. Once we ‘got’ that Jaimie had SPD but also needed help with her nutritional needs and anxiety at the same time, we focused on all areas and she started doing much better.

6) What should somebody do if they think their kid or themselves have Sensory Processing Disorder?

The first thing to do is write down everything—symptoms, triggers, what calms the child (or themselves)…everything. Then research places in his area who deal specifically with people who have sensory sensitivities or SPD. If you have trouble finding someone in your area, visit the American Occupational Therapy Association (www.aota.org) or the Canadian Association of Occupational Therapists (www.caot.ca) or even the SPD Foundation (www.spdfoundation.net) to find someone. It’s very important to find an OT who is specifically trained, for years preferably, with people who have sensory issues. If you’re looking for your child, find a person who has experience dealing with children or focuses mainly on pediatric OT.

Once you figure out your child’s, or your own, specific needs things can start getting better.

7) Do you have any other tips that could make life easier on someone dealing with sensory processing issues?

Even with therapy and the Sensory Diet in place it can still be a trying time helping our child cope with SPD. Basically, patience is key. Go with what works at a given time then change things up a bit when you notice your child isn’t using the same tools or exercises. My good friend, Lori, tells me to watch Jaimie with ‘sensory glasses’ on. That’s how you can tell when something sensory is going on that needs action or when she’s just being a grumpy seven-year old testing her boundaries. Because above all else Jaimie is just a little girl.

Parents, or adults with sensory issues, would do great connecting with other parents. That helps ease feelings of isolation or frustration. Sometimes just talking to someone who understands what you’re going through—whether on the phone or online—can be enough to make you feel better.

You can find Chynna's blog at http://lilywolfwords.blogspot.com/

I received a copy of the book to review, but also one to giveaway!

To enter, tell me anything about sensory processing problems. (whether it be a tip, an experience with your own child/you, a statistic, quote from a site, etc...)

Extra entries (please leave one comment per entry)
*Follow me on Google Friend Connect
*Follow me on Twitter (AspergersKitty)
*Follow Chynna on Google Friend Connect

Residents of U.S. and Canada are welcome; winner will be picked on noon March 1st, 2010.