Latest News on Autism

I thought this post (copied below) was an interesting reflection from parents in the trenches. Lately, there have been several new studies examining causes and correlations of autism, including the link between air pollution and autism. For a parent of a child with autism, this can be equally promising and exhausting, and doesn’t take away from the day-to-day challenges and wonders of parenting a child with special needs.

Quoted from The Guardian:
Last week, Kristina Chew wrote about how she’s struggled with whether it’s right to support the medical community’s efforts to find a cure for autism. We opened up the issues raised Kristina’s piece to Guardian readers, and asked parents of autistic children to weigh in on what finding a cure means to them. Nearly 200 parents wrote in with their thoughts and we’ve published ten responses below.

Jane Daniel, London: ‘I’ll take the cure, please’

At diagnosis, the paediatrician said, “I’m afraid it’s autism,” and gave me a leaflet from the National Autistic Society. This pretty much set the tone for our experience with physicians: generally woefully ignorant, and not interested in investigating beyond the diagnosis. The lazy Rain Man references are as insulting as they are dull. Why on earth wouldn’t you want to find a cure? There is no hope that my son will ever be able to live independently, and I’m terrified at the prospect of what will happen when I’m no longer around to advocate for him. I’ll take the cure, please.

Miriam Cotton, Ireland: ‘The concept of a cure is offensive’

My doctors accept my son’s condition and don’t speak of it as something that can be cured. The concept of a “cure” for autism is as offensive as wanting to cure Down’s syndrome. There are therapies and supports that can substantially help the person to mitigate the symptoms of their condition – to develop strategies for living with it optimally – but the condition is there for life. Early diagnosis and help improve a person’s capacity for independent living exponentially. It’s the same for ever disability, of course, and yet our governments steadfastly refuse to confront this fact.

Dave Korpi, Oregon, US: ‘I would love a remedy as much as a cure’

I don’t feel like autism is as much of a stigma as it used to be. On the other hand, the US media sends mixed messages about why autism rates are rising; the CDC attributes it to better diagnostics, which is laughable. I would love to have a remedy that would lessen the intensity of the symptoms, as much as a cure. My son is brilliant in some areas, infantile in others, and non-verbal. Trying to develop independent living skills is woefully not enough, but it’s better than no strategy, or warehousing, which is still commonplace.

Gordon Darroch, Scotland: ‘The idea of a cure is meaningless’

The doctor has had very little input into the lives of either of my two autistic children, mainly because they aren’t taking medication. Speech and language therapists, educational psychologists, child psychologists, paediatricians, schoolteachers, music therapists, respite care workers and social workers have got most of the bases covered. I find the idea of a cure meaningless. I want my children to acquire skills that let them get on in life and become happy, sociable, thoughtful, considerate people, but they’ll always be autistic. If I’d been able to prevent them being born with autism I would have done so, but dwelling on that notion is just denying the reality of the situation they’re in. They need practical help and therapeutic support now, not the dubious benefits of a miracle pill at some point in the future.

Leila Couceiro, California, US: ‘I still have hope’

The researcher who works on new medications is not the same person who will think about smarter ways to include and support the adult autistic population. My child is only nine years old, so I still have hope that a new drug to lessen his symptoms will be discovered in his lifetime. And at the same time, not a day goes by without my worrying about his adulthood after I’m no longer alive and able to make sure he’s safe.

Rob Gentles, Ottawa, Canada: ‘I would jump for joy, but I am doubtful’

For my family, we just need help getting Alex as independent as he can be. I fear for Alex once we are gone. I hope that he will be able to advocate for his own needs. I hope that there will be good people who will help him look after himself. We will do what we can to save money for him now, but we are not rich and we can’t predict the future. I would jump for joy if there were a cure, but I doubt there will be one. Whatever the cause of autism, it has probably been with us for a long time.

Tara Hughes, United Kingdom: ‘There is nothing “wrong” with me’

I’m autistic. I frequently despair at the coverage of autism in the media. I do not “suffer” with autism. I don’t need or want fixing or a cure. Equating autism with cancer is extremely offensive. I don’t need curing. I’m autistic; I have a different operating system that’s all. I’m not “less than” the majority who run on a different distribution. Some things I can do really well, and some things are harder and I might sometimes need help. Reasonable adjustments, anyone? Autism is not an illness. It’s a way of being. It’s the way I am. There’s nothing “wrong” with me.

Sherry Nelson, New Jersey, US: ‘A cure would mean everything to us’

My son is ten. When he was little, it was all about ABA therapy. The hope that he could learn to communicate and function normally was alive and well for a while. A cure would mean everything to our family. Our son is so sweet, happy and loving. But he can’t tell us his most basic needs. He can’t tell us he is hungry, or thirsty or sick. You can get through the day and make sure he eats and drinks enough, but when he is sick, it is so hard. You are guessing half of the time, trying to help him get better. That is when being his mom just breaks my heart.

Yakoub Islam, Greece: ‘We need to maintain the funding’

My son starting taking small doses of Risperidone at age 16 (he’s now 20), to help manage his challenging behaviours, which had become more destructive during his adolescence. The medication was effective, as part of an overall programme of behaviour management. We would never have managed him living at home until he was 19 if I had not trained as a special needs (autism) teacher, shortly after he was diagnosed at three. My concern is that my son’s specialist autism care placement continues to be fully funded. It sickens me that so-called austerity measures are targeting some of our nation’s most vulnerable people.

Michelle, Canada: ‘Support is what we need’

My boys don’t need a cure – they are not diseased. They were born with autism: intervention was needed as early as the first three months of their lives. To “cure” my kids, I’d be wishing my sons would be different kids than they are today. Support is what we need, not the insulting idea that our kids are suffering from a disease.

Preparing for College and the Workplace

Part of my role as a Speech-Language Pathologist is to prepare my students for life AFTER school.  For those children with High-Functioning Autism and Asperger’s Syndrome, this includes preparing for college and for the workplace.  The employment rate for these students is 55%, which is lower than those with intellectual disabilities.  As our kids start high school, the question of “What’s next?” is always at the back of our minds.

Students with HFA/AS don’t need vocational training in the traditional sense.  Rather, they should be supported in their strengths (e.g. art and video game creation) and supported in their areas of weakness (e.g. conflict management, executive functioning skills, social discourse).  That being said, it’s important that they learn work-management skills in order to be successful in future jobs.  There are some basic skills for success that we can support, both as parents and professionals.

To begin with, explore work and volunteer experiences during high school.  If your child has a fondness for animals, look into shelter work.  If your child loves books, the library provides endless volunteer opportunities stocking shelves and assisting with reading programs. If your child has a knack for computers, reach out to the high school computer lab teacher and ask if your child can help load new programs, troubleshoot problems, and assist those students who need extra help.  Besides the hands-on training that these volunteer experiences provide, your child will be learning many executive functioning skills: how to prioritize, time management (showing up for work on time), asking questions and communicating with bosses, responding to criticism or strict guidelines, following rules, and in general operating within the constraints that come with many employment situations.

It is also important that we support our students in extracurricular activities.  Like the work situations previously described, extracurricular activities allow our children to capitalize on their strengths and address some areas of weakness.  Joining chess club for your chess whiz, for example, allows your child to feel successful in an area of strength, while also pursuing friendships and relationships with peers.

As we progress through therapy, I have frequent conversations with my students about college, the work world, their dreams and goals for the future, and the different skills they will need to get there.  The same goal-setting and reality-checking can be applied at home.  Students with HFA/AS are often unrealistic about the future and the steps needed to achieve certain goals or dreams.  Focus on helping and supporting your child.  We aren’t trying to “change” them, but rather give them an understanding of their diagnosis and the best way to live successfully with their neurological differences. 

In high school, we begin to pull away some of the special accommodations, or at least encourage the student to begin addressing what they need to be successful.  After school, the world won’t compensate for them, so it’s important that they learn how to ask for what they need.  Self-advocacy becomes a crucial skill to be learned.  Your student can participate in their IEP or teacher meetings, and role playing at home strengthens their awareness of what their needs might be. For example, before their college entrance exam (like the SAT), role play what the setting is going to feel like, what their emotions might be, and how they might know the answers to the questions but the environment could be distracting.  Set up a plan to address some of these distractions or feelings, and problem-solve how they are going to handle the rest.

If you’d like to read more, there are many online resources (http://mappingyourfuture.org/collegeprep/, www.collegeautismspectrum.com/collegeprograms/html) as well as books (try “The Parent’s Guide to College for Students on the Autism Spectrum” or “Preparing for College: An Online Tutorial”) to help you help your child navigate this next phase of their life. 

Once your child is in college, the journey isn’t over.  The dropout rate for our kids is 40%, so these conversations and check-ins need to continue to happen.  It sounds like a lot of parenting, I know it sometimes seems exhausting, and at some point you’d like to just step back and let them fly.  But I know from experience that you are some of the most steadfast parents around.  Your kids grow up quickly in some areas, but slowly in other areas, so make sure you don’t send them off too soon.  The world will continue to be a better place for the contributions your children make to their school, workplace, and community.  And your role in making that happen is more important than ever.

How About Fall Meltdowns?

Wow, it’s been awhile since I posted! The steady days of summer are now gone ~ all too fast, in my opinion. Many of the kids I work with took amazing vacations with their families. Roadtrips across the states, trips to the beach or Hawaii, and even some European vacations. One of my families cashed in Dad’s/Mom’s sabbatical time and took their two teenage sons around the world. Talk about a great learning experience!
The slowdown was great for me, as well, and I spent the extra time with my girls and extended family. Ah…

And then September hit. Oh yes, my last post reflected on the summer meltdown that often occurs for our kids as we transition off a set school schedule and into more unstructured summertime. But there’s a reversal to this shift when school comes around again, and the shift can be exhausting for both kids and parents alike. I have heard from so many friends and families about the meltdowns happening after the school day. Our kids can hold it together while at school, but it’s very taxing for them! And then we then get home… boom!

A few tips from an SLP perspective:
1. Give your child lots of “down time” on the weekends in September and October. While soccer and pumpkin hunting can often fill the weekend time, it’s important that your child has sufficient time to decompress.

2. With that free time, help them schedule it. For example, make a schedule with BREAKFAST-OUTSIDE PLAY-LUNCH-READING-QUIET TIME-CHORES-DINNER so they know what to expect. They will be able to relax into the “known”, rather than the “unknown”.

3. Set aside time with each child individually. If you need to tag team with your spouse or a grandparent, do it. Arrange for each child to have some quiet alone time, reading, playing a game, or going for a walk with Mom or Dad.

4. Email/chat with your child’s teacher. (I know that you are busy, teacher friends!) But check-in, just briefly, with your child’s teacher to get a read on how things are going at school. Establish open-lines of communication from the get-go. If your child has a Resource Room teacher or case manager, leave them a message, as well.

5. Know that you’ll all get in a groove, it just takes a few weeks. Recognize that back-to-school stress often happens for Mom and Dad (speaking from personal experience here!) and it magnifies what your child is going through.

10 Tips for Avoiding or Decreasing the Summer Meltdown

All kids have meltdowns.   Some kids fly off the handle, and lose the ability to process anything complex (including language!) around them. Other meltdowns may appear mild to the outsider, but to mom or dad are distressing. Some kids go through phases of extreme meltdowns, followed by periods of relatively few disasters.  But all kids have them.

Where does language fit into this?

When your child is overloaded, the first thing to go are the higher cognitive processes (like language and executive functioning/problem-solving abilities).  This means that your child is going to have a much harder time understanding what you are telling them, using words to express themselves, or problem-solve to come up with a solution.  So, not only is your child tired, hungry, or on sensory overload, but they have even fewer coping strategies than pre-meltdown.

It’s a signal to reset and recharge.  Just like adults, kids get overloaded, overwhelmed, and over-tired. Dealing with stressors is natural part of life, and we can teach our children positive ways to handle them. We can also be on the lookout for times when we can avoid or decrease the meltdown, both in frequency and intensity.

Here are 10 ways to avoid or decrease these meltdowns in your child:

1) Eat healthy.  Avoid high sugar and salt in your child’s diet.  We have heard about the ups and downs that come from a sugar rush.  Be very aware of what you are having your child put in his body.  It is as powerful as medicine!

2) Run one or two errands at a time. For the sake of efficiency, I always want to try to group my errands into one big blast of shopping mayhem.  But most children under 5 can only handle about two stops before needing a break.  Many children get sensory overload from shopping malls and grocery stores.  Try and recognize their need to take a break.

3) Use positive reinforcement. When your child is doing a good job of managing a tiring situation, build them up. Let them know that you recognize their perseverance. I try to recite the mantra in my head: “Ten praises for every one criticism.”

4) Get  regular exercise.  Like food, exercise is medicine for the body.  It will help your child regulate their emotions and behavior.  It will also help them decompress.  In my neighborhood, it is common to see entire families out for a walk in the evening.  It’s a great way to de-stress for kids and for parents.

5) Establish a soothing, quiet space where your child can be alone. A calm space can be a bedroom, a special place in the backyard, or even a space in a closet.  Depending on your child’s needs, make this a serene environment by using cool colors, comforting textures, and quiet. (For your child, “quiet” might be total silence, white noise from a fan, or soothing music.)

6) Maintain a routine. Meltdowns can often be a signal that your child is getting overwhelmed by choices or uncertainty.  A regular set of expectations can provide the structure to get back on track.

7) Get enough sleep. It’s hard in the summertime to get your children to bed on time!  It’s still light outside when my daughters head to bed in the Pacific NW. Blinds and blackout curtains can help with this, and a fan for white noise (to drown out the high school students down the road!) can help your child drift off to sleep.  Again, it goes back to routine, and sleep is a large part of your daily schedule.

8) Use signs, gestures, and facial expression to communicate with your child.  When your child is on the precipice of a meltdown, it’s time to scale your language way back. Try leading your child to a quiet corner, get down to their eye level, and use as few words as possible to bring them back around.  Your eyes and smile can speak more than a thousand words, and chances are, your child will be better able to process the feeling of warmth and understanding rather than your words.

9) Give your child an outlet for their energy. Summer is a great time for playing in the pool, running through the sprinklers, shrieking and letting loose. Make sure your child has access daily to such freeing pursuits.

10) Prep your child ahead of time on what to expect, and recap afterwards on how they handled the situation.  You can build your child’s language around a situation.  In the heat of the moment, during a meltdown, your child may not be able to use their words to express themselves.  Helping them decompress at a later time can also help them build language scripts to problem-solve during tricky situations.  Give them some strategies on what to do during a stressful time.  For example: “I could tell you were really tired at the grocery store this morning.  You did a great job of breathing slowly and asking Mom for a snack to get through it.  I liked how you used your words ~ ‘Hey Mom, I’m feeling tired!’ ~ to tell Mom how you were feeling.”  Help them identify their emotions (frustration, anger, etc.) so they can better use language to manage the situation.

One last note…

Don’t forget, you are their model!  How you manage your meltdowns can be helpful to your child.  “Mommy needs to take a break because she is getting frustrated.” Identify your emotions verbally so that your child can learn to map language onto what they feel.

Autism and Employment

A recent article from the Child Mind Institute:

Autism and Employment

Young adults everywhere on the spectrum struggle to enter the work world

After working part-time her first two years of college, Debbie D. ramped up to full time along with her coursework the last two. But this admirable juggling feat left her so frazzled she would forget to eat, brush her hair or fill up her car’s tank—”I ran out of gas on the highway more than a few times.” So she couldn’t wait to graduate in 2007, thinking that once she was able to focus on her career, life would get easier. She was wrong.

At 22, “I was in the midst of moving into my first apartment,” recalls Debbie, “learning how to pay my own bills, becoming familiar with a new routine outside of the structure of school, and learning what being a professional meant.” Her transition into adult life continued to challenge her executive function skills—things like planning, time management and multitasking. Meanwhile, her promotion to shift supervisor at the same human services company that had employed her throughout college exacerbated the social and sensory difficulties associated with her autism spectrum disorder (ASD). Four years after receiving her diploma, she says, “I’m still trying to learn the ropes.”

Despite her struggles, Debbie is beating some very dismal odds among the young ASD population on all points of the spectrum. Caregivers and self-advocates have long had grave concerns about what the future holds for the “great wave” of children and teens diagnosed with ASD, half a million and counting, who will be aging out of the educational and support system provided by the federal Individuals With Disabilities Act (IDEA) over the next decade. They and their parents face the great uncertainty of adult services, post-secondary education  and employment opportunities.

Their fears have been confirmed by a just-released study, the largest and most definitive to date, examining how autistics do after they transition out of high school. The study shows that two years after graduation, half of ASD young adults have no paid job experience, technical education or college. Nearly seven years out, the numbers improve but remain bleak, with one out of three having had no paid work or post-secondary education. That’s a higher percentage shut out of the work world than for other disabilities, including the mentally disabled, with heightened risk of poorer outcomes for those from lower-income families and those with greater functional impairment.

Continue reading at link below:

http://www.childmind.org/en/posts/articles/2012-5-21-autism-and-employment#.T8UtnxZfxr8.email