Weekly Wrap: Starting Over All Over Again
Book Review - "The Vaccine Court" by Wayne Rohde

Autism Advocacy: 5 Easy Things to Do in 2015

Pinball 5


By Cathy Jameson

Did you add any autism advocacy resolutions to your list of things you hope to do this year?  Here are five easy things to do to stay active in the autism advocacy community in 2015:

Join a support group. We can suggest a few national groups for you (see our sponsor’s links on the right side of the screen), or you can do a search for autism groups in your area.  Support groups are designed to encourage, to aid and to provide resources to its members.  Local meet ups, lending libraries and workshops are just a few benefits some support groups offer.  When you’ve found a group that meets your needs and views, participate!  If getting to meetings or events isn’t possible, find out if your group offer online message boards or social media opportunities.  If they do, keep abreast with your groups’ news by joining their Facebook, Twitter or Pinterest pages.  The best part of those social media pages is that not only can you network and stay in the loop from the comfort of your home, joining these pages is free. 

Attend a Conference.  Conferences are another way to stay connected with other parents and advocates in the community.  Conferences are offered by various groups and entities throughout the year.  The national ones tend to draw in large crowds with big-name presenters.  I find that these conferences are quite fulfilling.  Gaining accesses to in-the-field practitioners, networking with fellow parents, professionals and persons with autism, and having time to socialize after learning all day is part of the experience.  If traveling to the larger conferences is not an option, look for smaller conferences or workshops in your area.  Those may be sponsored by therapy clinics, through local support groups or via online webinars. 

Contact your Representative.  You have needs; your representative has resources.  It may not always seem like this, but your representatives work for you.  Talk to them.  Find out what they’ve supported and what they’ve sponsored.  Tell them what you need them to do for you.  Take a few minutes to stop in their local office to introduce yourself.  Get to know the staffers, especially the health staffers, so that you can build a positive relationship.  Then, send emails.  Send tweets.  Join their Facebook conversations.  One click, one phone call, one FB ‘like’ lets them know that you are actively engaged.  Stay engaged in what’s on their radar in the hopes that they, in turn, can know what’s on yours. 

Adopt a family.  For those who are not directly affected by autism yet, you are bound to know someone who has.  Ask that family if they need anything.  If it’s a specific allergen-free grocery item they can’t find locally, or if their child is in need of a piece of therapeutic equipment, or if it’s simply an hour of respite that could help them so that they can stop, breathe and refresh, find time to offer assistance to a family.  If you can, make helping a habit.  By just being available, physically and even from a distance, can be the best gift. 

Tell your story.  Some people do this already, so keep on talking!  Continue to tell your story.  People are listening, and we need to keep the conversation alive.  We have become a go-to resource when it comes to autism, vaccines, environmental triggers and more.  So talk to new parents and parents-to-be.  Tell them what you know and what you’ve learned.  Direct them to a support group where they can feel safe asking their questions.  Suggest reading material for them so that they can start their own research.  Remain available to these new parents.  Be there for them because you know all too well what it feels like to not have any support. 

Those are just five easy things to do over the next twelve months.  Can you do it?  Can you pick one suggestion from above and do it today?  If you already made your own list of autism advocacy resolutions, do share your ideas with us.  We’d love to see what autism action you have planned for 2015.  Let’s work together to keep our children safe, to keep the conversation going, and to keep the spirit of giving alive all year long.

Cathy Jameson is a Contributing Editor for Age of Autism.

Comments

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Cherry Sperlin Misra

These are all very interesting comments and I shall certainly try to do some free babysitting for autism during my next visit to the U.S.
I feel that it would be useful once in a while to have a brainstorming session on AOA. It could be announced in advance - People giving well thought through ideas for actiion. I often think that we need to make more use of psychologists and psychology in our efforts. Ill give an example- People who study animal behavior have found that even other primates have a deep sense of injustice- In studies, they saw chimps throw away food because they were angry that another nearby chimp was given more food or better food. I felt that same sense of injustice when Dan Olmsted wrote that we, the gullible suckers shoot up our kids with vaccines, while the scientists that we pay to tell us the facts, silently think "Youre not giving that to MY grandchild or MY wife." I tell people in Delhi, which has two big offices of the WHO, " Do you think the senior officials at the WHO give their babies vaccines with mercury? Forget it ! They get their kids vaccinated in Europe or they go to one of the few pediatricians that use only imported vaccines without Thimerosal .
Regarding the large organisations, I have been exceedingly sceptical of them every since I saw a brief, to the point comment on AOA , referring to all big health organisations, : "At the top of all these organisations is someone who does not want the problem to go away" . I had noticed that some of the best and most useful comments , that appear to come from someone who is in the know- are brief and to the point. They are always anonymous. I witnessed the truth of this statement not so long after , when one of the big juvenile diabetes organisations took on as their new head someone who had written a very pro vaccine article earlier. What is a person of that type going to do, when it is obvious that some cases of juvenile diabetes are due to vaccines.

Jenny Allan

Anne says :- "Baby sit for a family".

Struggling families are desperate for respite care, and a few hours free from the responsibilities of caring for an autistic child are very precious. A London charity provided respite care, one evening a week, for my autistic grandson. This enabled my daughter and her husband to go out for a meal together and relax. The two lovely ladies were provided with tea and biscuits. Mostly, my elder grandson slept, having been at school all day.

Sadly, respite care is very 'patchy' in the UK, and even when it is available it can be difficult or expensive to access. One idea might be for parents, living in the same areas, to form baby sitting circles. Health workers could help with initial parental contacts. It's important for families and respite carers to get to know each other beforehand. Autistic children often react badly when confronted with strangers, or breaks in routine.

Anne

Baby sit for a family.

Jeannette Bishop

I'm still working on my New Year resolutions, but in terms of short term advocacy, I noticed this report asking for input on the "Vaccine Court" and on Dr. Thompson:

http://benswann.com/report-vaccine-court-keeps-thousands-of-injured-families-waiting-for-compensation/

Grannyblue

Five easy things I have already done over the past two decades, and now I am old and tonight I am very tired, and have full custody through convuluted and tragic behaviors and family exploded happenings with guardianship of an adult grandson with autism. Y'all out there, please keep doin' all for me and our grandson. I will soon get up and go again;tonight I must rest.

Twyla

P.S. And thanks to all who are engaging in various forms of support to autism families too!

Twyla

Although I rarely if ever venture over to the extremely hostile pro-vax sites, I do see a value in posting comments to all the mainstream news sites - newspapers, NPR, etc. - so that there is at least some rebuttal to the propaganda out there. Thanks for your "peeps" Greg, and thanks to all who are engaging in various forms of advocacy.

Autism Mother, British Isles

Over fifteen years ago I was informed by a person employed by the National Autistic Society that it monitored posts on JABS ..... make of that what you will.

cia parker

Thank you, Greg, I appreciate your special peeps!

Jenny Allan

@Greg-I too commend persons brave enough to enter the 'lions' dens' aka those paid pro vax websites, but commenting on AoA and other 'friendly' sites is certainly not 'playing to the choir'. AoA is very closely monitored and often dissected by the likes of Carey and Gorski on their own web pages.

Maurine Meleck

And bring the Eric Gladen documentary "Trace Amounts" to your city if it's not one on their itinerary.

Greg

I would also add use social media to speak up. And don't just voice your concerns on sites that are friendly to our cause such as AoA, TMR, etc. Doing so is essentially speaking to the choir. We need instead to continue to take our message to the hostile crowds. Anne,Marine, CIA Parker, Twyla, and others special peeps to you in this regard.

Jenny Allan

Just a wee word of warning about 'support groups'. My own experiences of these in the UK, (NONE of them were about vaccine damage), has been 'mixed' to say the least. It's a very sad fact that certain persons are paid to join these groups and disrupt them, oftem getting themselves into positions where they are in charge of the proceedings. These persons receive both funding and training from their shadowy 'sponsors'. They then actively work to discredit and smear any other members, who look like they are getting anywhere with their support and campaigning. Believe me it's very abusive, and although the smears are invariably without foundation, the mud sticks!! For persons who joined these groups hoping to receive person to person support, these kinds of actions can be devastating.

Most of us are aware of high profile groups like 'Autism Speaks' which have virtually 'highjacked' the autism campaigning in the US. Does this organisation speak for YOUR family? Certainly NOT mine. In the UK the National Autistic Society receives funding from the Government. I have no personal experience of them, but some parents of autistic children have stated they were 'unhelpful'. The Government funding ensures they won't become involved with any vaccine controversy. One wee Scottish autism treatment group, which did sterling practical work with autistic children, has had its funding pulled. Other, unfunded groups, battle to make themselves heard. So far all we get are words, but what's needed are actions.

Maybe it would be helpful for US and UK persons to nominate groups which have been helpful to them. I note Cathy's list on the right and am aware of the 'smears' which Generation Rescue and Safeminds have been subjected to on certain pro vax websites. In the UK my daughter found JABS, started by Jackie Fletcher, whose son Robert fell foul of the Urabe Mumps containing MMR vaccine, very helpful and informative, long before the Wakefield scandal. JABS is still up and running and yes, still helpful and informative.

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