Autism Speaks – the Good, the Bad and the Ugly

Let’s work backwards and talk about the ugly side of Autism Speaks in my humble little opinion.

I think it is ugly for Autism Speaks to keep creating this huge gap of services and intervention disparity. Here is what it does – they go state by state and only fight/advocate for the upper/middle class autism families that have private insurance to get coverage for only ABA (applied behavior analysis) therapy. What happens here is those that are low income who we know are disproportionately minorities usually have Medicaid don’t get the same and equal coverage as the private insurance kids do. In addition, there are other types of therapies that help children with ASD, but AS only has eyes for ABA. 

Remember in 2010 when the ACA (health care law) was being written and many big autism organizations lead by Autism Speaks kept asking the legislators to add autism behavior therapy as an essential benefit which was all good. However, when we asked AS if they could also advocate CMS rules changed so that autism behavior therapy was essential benefit under Medicaid – well they acted as though we asked for the moon or something. I mean – we know that most autistic individuals have Medicaid and the idea of leaving them to get equal access to necessary behavior therapy was cruel and is exactly what creates health inequity and health disparity – in case anyone was still confused. 

To make a long and hard advocacy on our part short – we fought this with a laser like focus by asking equal access to autism therapies for all. And, made it very clear giving therapy to the haves and leaving have-nots will create even more disparity. As a result, if you remember behavior therapy was taken out of the final ACA bill and CMS administrator along with Sec of HHS stated – if states wanted to add it they could and pay for it in both private insurance and medicaid through waivers such as 1915i or 1915c. 

I know Autism Speaks is trying a little here and even partnered with Black churches in Atlanta – but come on – that is like putting a cup of sugar in an ocean. It is still salty and not enough. What AS needs to do is go to each state with the framework and mindset of equality. That means actually meeting and talking to low income autism communities, hearing their voices and views then advocate state level change for both public and private insurance. Autism Speaks helps only kids with private insurance get intervention and treatment while it ignores low income kids with Medicaid. The idea of only helping select few who can afford the therapy is both unequal and cruel. 

There are still dozen states or so left and we as low income/minority families and advocates can fight Autism Speaks to either speak for ALL kids or get out of our state as we did in Minnesota. If you are a parent that lives in these states, you can do it. Start with your local house/senate representatives and your Medicaid agency to plant the seed of equality for all or none for no-one. Furthermore, just because AS put a state under having private insurance covering autism therapy does not mean it does. For instance, many of these states only approved very little coverage usually less than 30% of the market for autism therapy coverage. In Minn – less than 20% of kids with select type of private insurance are covered for autism therapy. But AS likes to claim all kids with private insurance have coverage and they do not. 

I thought it was ugly and bad taste when their hot shot lobbyist would come to our state of Minnesota and only met with non-minority communities then only testify change in the private insurance. That kind of policy is what creates unequal access to autism care and autism intervention and Autism Speaks is largely responsible for such disparity.

The Bad; 

Well if you read John Robison’s last Blog or follow autism news nationally, then you heard John (fellow IACC member) resigned from Autism Speak’s board for good reasons I might add.

First, the idea of speaking for autism and excluding those with the condition is really the Sandra Fluke theory.  AS must actually have autistic people in their staff, leadership and board.

2nd, Autism Speaks usually speaks for us without us including minority communities and that can’t be good.

Another example is Disney and their guest assistance card whereby AS told them it was OK to take it away from people with disabilities including autism without any real discussion with the autism community. Now, I hear they are trying to run away from that policy – but that is a little too late and damage already done. Imagine if AS actually listened to autism communities before it spoke for autism families. Well – maybe there is hope. Well – that is if their current president Liz Feld walks on the ground and not on air by actually engaging with autism families.

The Good; 

Again if you follow autism blogs and searched who hates autism speaks, you can read for days. By the same token – without them and before them Autism was not on anyone’s front mind. They have managed to put autism in front of law makers, policy advocates, media and even Hollywood. If you listen or read Suzanne & Bob Wright’s comments or views – their compassion for their daughter and grandchild comes through. You can’t fake that kind of passion and I don’t think they are. I think they mean well that maybe hire bunch of out of touch people especially in their family services. 

AS has funded many needed autism research and awareness including their recently funded Autism Project in Ethiopia. Though, I am still waiting & asked many times for AS to fund minority based agencies in the U.S that would target under-served families and translate their first 100 days kit into other languages. Not really hopeful with Mr. Bell in charge of services and AS President Ms. Feld being totally out of touch – my humble little opinion. 

Personally, I enjoy what Mrs Wright says including this last post that got a lot of attention especially from self autistic advocates. But if you read her words, she perfectly describes those with classic, nonverbal autism. I know as an advocate – very few speak for those that can’t and I am glad at least in that area AS spoke for thousands of children and their families who don’t sleep, don’t relax, fighting for everything and are sooooo tired daily. And, I thank her for that. 

As I tried to read the backlash to Mrs Wrights words from many big agencies including Arc and many autism bloggers – I became even more convinced that she was indeed speaking for those without a voice. There are autism families suffering exactly how she described with wondering, sleep, food, etc and etc. I can name tons of them in the Somali community alone. I really hope that those that have autism but are able to function and adjust well to life’s many challenges take into consideration there are many that can’t and need significant support and better treatments. Autism is a huge spectrum and all of these children/adults have very different challenges and variations. Therefore, we should not try to knock down if someone has auti
sm in a different way than another person because united we can stand up to autism and get the support, services and research needed for everyone. 

Overall – maybe there is hope for AS. If I can paraphrase their logo of it is time to listen usually aimed at law makers – Maybe it is time for Autism Speaks to Listen to autism families and autism communities including minorities and adults with autism.

Thanks!

Idil – Somali Autism Mom & Minority Advocate