When it comes to non-profit organizations working in the autism spectrum., most people are aware of Autism Speaks.
When it comes to non-profit organizations working with Autism, most people are aware of Autism Speaks. The organization has a reputation for being unsupportive of individuals with Autism.
Now this article and research is not my normal play ground but after diving deep in research for Autism. I keep coming across Autism Speaks and the controversy behind it. I needed to talk about this. If I can in anyway stop a family from being exploited and used for money by this organization.
In this article, we will explore why that is and what it means for anyone trying to find help or resources for family members who might be on the spectrum.
WHAT IS AUTISM SPEAKS?
Autism Speaks is a non profit organization, founded in February 2005, by Bob and Suzanne Wright. The organization’s mission is ” to increase understanding and awareness about autism spectrum disorder. and to promote services and supports for individuals and families affected by ASD”
That’s a broad mission, and any nonprofit can describe themselves in that way. So why is Autism Speaks so often singled out? First of all, Autism Speaks has a very high profile. It’s one of the largest autism-focused non-profits in the United States, and it receives a great deal of media coverage.
That alone can make it a lightning rod of controversial chatter. But beyond that, there are specific reasons that many people are critical of Autism Speaks.
WHY IS AUTISM SPEAKS SO CONTROVERSIAL?
There are many people with autism, parents of autistic children, and professionals who have had bad experiences with Autism Speaks.
There are a multitude of reasons why autism speaks organization is such a controversial topic.
One of these is that their approach to autism is ignorant and bares no resemblance to what it actually is and the struggle anyone with autism faces.
A DANGEROUS ROAD TO FOLLOW
They portray autism as something that needs to be cured, like it’s some kind of disease. This is all thanks to their Eugenics founder, Suzanne Wright, who constantly uses language like”eradicate” when referring to autistic people.
They also pedal dangerous medical practices on the public by using fear mongering and imagery.
Their anti-vaccination propaganda is constantly being blasted out to the public through their outlets too, which only antagonises people with autism further and goes against evidence based practices.
They also don’t understand the needs of autistic people and how they would need to cater to them if they were at an event, assuming they should sit quietly in a corner while everyone else has fun.
They don’t seem to get that since someone with autism may have different needs from most people that they may need some extra care.
The controversy does not stop there. Not only do they have a bad reputation among autistic people but also among allies, parents and survivors with whom I’ve spoken with.This is because they’re one of the worst activist groups out there claiming to do good work on the issue of disability.
As a mother of a child on the spectrum, I cannot recommend this organization to anyone I know who is living on the spectrum.
There are many other organizations who fight for and listen to those with disabilities more than Autism Speaks claims to do.
WHAT TO KEEP IN MIND WHEN RESEARCHING ORGANIZATIONS
You might find that you need to do some searching to find organizations that are a good fit for you and your needs. It’s important to keep in mind that even an organization that seems great for many families might not be suitable for you.
That’s normal every family has different needs, and organizations need to be sensitive to that.
There are a few things to keep in mind when you’re researching organizations especially if you’re looking for an autism-focused nonprofit. First of all, try to get a sense of the organization’s mission.
What does the organization hope to achieve?
What services do they provide?
What are its goals?
How are those goals reflected in its day – to – day work?
Beyond that, it’s important to find an organization that can meet your specific needs. You might want to talk to other parents and families who have dealt with similar issues.
Get recommendations from your school district or from therapist and specialist who have worked with you and your family.
HOW YOU CAN HELP EVEN IT YOU DON’T DONATE TO AUTISM SPEAKS
There are lots of ways you can help even if you don’t donate to Autism Speaks or other organizations.
You can volunteer, donate your time, or spread the word about autism focused organizations. If you’re not in a position to donate money or goods, you can still help by spreading the word. It’s important that people know about organizations like Autism Society, Autism Self-Advocacy Network, and Autism Empathy.
And you can help make that happen. You can share articles and news stories about those organizations. You can mention them in your social media posts. You can talk about them at school or at work.
It would be nice to see more sports teams advocate for Autism Spectrum. Now that my son is 7 years old in my area sports for children with disability is lacking a great deal. So maybe if you’re familiar with coaching or leadership you can sponsor a team or strat one in your community, which I think is a great idea by the way.
Autism Speaks is very controversial and for good reasons, but the organizations has also made efforts in recent years to improve and repair it’s relationship with the autism community and I do hope that it sticks and they stick with it. If you’re in the market for autism specific organizations, it’s worthwhile to look beyond Autism Speaks and to consider other options.
COMMON DEFINITIONS AND RESOURCES FOR AUTISM SPECTRUM
Some of the most common terms and definitions used when talking about Autism Spectrum in our children:
ASD: Autism Spectrum is a medical condition that affects how people behave, think, and feel. ASD is characterized by a persistent alteration in brain development resulting in a range of dysfunctional behaviours and below average intellect.
HFA: High Functioning Autism is a form of ASD that impairs social interaction, communication skills and interests. People with HFA have above average intellectual ability.
LDI: Low Functioning Autism is relatively less severe. It corresponds to mild autism, Asperger syndrome, or classic autism. It primarily affects social interaction and social skills.
There are many resources available for parents on the autism spectrum. Here are some resources that can help you:
Respite care: This service provides a break from the day-to-day caregiving responsibilities to families or loved ones who are providing care for an individual with ASD. The resources are provided by an organization or individual contracted with the family.
IHSS in home support care: IHSS usually refers to health and Human Services System, which provides in-home support services to people who need help with daily living activities, such as taking medicine, bathing, cooking and eating, getting dressed, or going to the bathroom. IHSS workers also can provide support and assistance you may need while you’re alone at home with your child. They can get your son ready for school or take him to play dates, doctor’s appointments, or other activities. They can also pick him up from those places and help him transition indoors and out of the car.”
In addition to normal child care, there are several resources and programs available for parents on the Autism spectrum.
Recreation Opportunities: Promote social skills and develop independence in a safe environment. One-to-one Therapy: Provides one-on-one attention and personalized program tailored to the needs of a child on the Autism Spectrum. These programs include occupational therapy, speech therapy, auditory integration training, and many other types of therapy which assist the child and their caregivers in improving the quality of life for both.
Adult Services: Respite care is a program that provides individuals with dedicated time and resources to take care of any personal matters. Additionally, individualized home support care enables development of caring routines, self-help skills and time management to enable individuals with autism spectrum disorder to become more independent in their daily lives. Education:
ABA Applied Behavior Analysis is a science-based treatment program which uses procedures that teach children new behaviors that replace those that are inappropriate or dangerous.