Alright – so, today is world autism day – April 2nd, 2018. This month is also autism month. How far have we come and how far do we still need to go?
First, let’s start with how far we have come. I would say really far. Many states cover autism therapy either through Medicaid and/or through private insurance. This means parent’s don’t have to move to a different state in order for their children get the services and treatments they need. We have also come far in the growing number of autism therapy agencies and autism schools operated and owned by autism parents. Autism parents are even going back to school and getting ABA or other autism therapy degrees. In Minnesota alone, – there are several autism therapy (ABA) agencies that are owned by autism parents. There is also an autism school that was started by autism parents in Minnesota and around the country. There is definitely greater acceptance towards autistic individuals. Our children and adults with ASD don’t get stared at anymore because they have autism or display autistic characteristics. Many restaurants, airlines, shops, parks, etc. are more accepting, and our children and adults with autism are able to participate more in their communities and live in more inclusive lives. We now have lots of evidence based interventions to help our children, teens and adults with autism. These are all good and positive things!
How far do we still need to go?
Well – Despite many businesses being more inclusive – sadly there are those that are becoming more exclusive and denying autistic individuals the right to enjoy life as well as everyone else, namely Disney. Not the happiest place for children with autism. I think what Disney has done is a shame. Even if there was abuse in the previous system, they could’ve made it so that they requested proof of the disability – maybe from the child’s doctor or mental health professional, but to alter the whole system and hurt those that are not able to wait in long lines or tolerate it was wrong. I hope those parents who have appealed win in the next cycle.
We also have not come far enough in research that actually decrease disparity, particularly those that are nonverbal and those that are minorities. For example, we know that autism is a behavioral disorder and all behaviors are culturally relevant, yet there is not a reliable testing tool for that.
We have not come far enough in the areas of law enforcement and autism training. Children with autism who have behaviors grow up to be teens and adults with autism, and we need to educate law enforcement how to understand autism and help them. In Minnesota – I tried to get this going but have not been successful thus far. Minnesota Department of Public Safety added 15 minutes of autism training for their state troopers, but the governor’s office was not willing to add funding to its budget for it this year. And, while I did not heavily advocate for this, from what I gathered couple of GOP and DFL legislatures – they were not really interested. Maybe Sen. Kari D – but even she was all talk and no action with legislation. There are so many stories about this and I really hope we get this ball rolling in Minnesota and nationwide. I also hope that IACC takes up this issue and pushes it from the federal government’s perspective. Miami incident, Arizona incident, Texas training video. This is an area that needs more attention from autism advocates, parents private/government agencies and politicians.
Many around the world including the United Nations will recognize autism today and this month, and as an autism mom, I am grateful that while we have ways to go, we have come really far from the refrigerator mom days. Finally, if you follow autism blogs like I do then you have read CDC delayed the new autism numbers. I am sure the numbers will increase and I am sure some will say it is due to more awareness, some will say it is due to vaccines, and some will say it is due to genetic. While the autism community fights over what is causing the increasing numbers, our children need help. I really hope we can come to some kind of a compromise and concentrate on helping individuals with autism live better and more inclusive lives while finding ways to prevent this disorder.
Above words do not reflect any committee, agency or candidate.
Idil – Autism Mom.