Monthly Archives: April 2018

Comments Off on Public Education, Autistic Students and Autism Parents – what is the real deal? Blog one

Alright – so, someone from DHS asked me a while ago why I don’t advocate in the public education system and autism. So – I started thinking about this including my own experiences with the public education system. I started speaking with autism parents and asking their experiences with school districts. I also started asking education advocates what their thoughts were in autism and public schools.

What I found was surprisingly shocking. First, most parents are not happy with their child’s public school. Second, most advocates said – the system is designed and stacked against the parents. One advocate said “the goal of the school district is to overwhelm the parents, make them exhausted, tired and eventually give up and stop fighting for their child because no one can fight forever”. Another advocate said “while the majority of superintendents and special education directors are good at their core, they hire ruthless and cruel gatekeepers whose sole purpose is to take the low hanging fruit and screw with the rest”. Some parents said “always use the words – due process because school districts hate that”. Other parents said “just home school your child because it is a fight not worth fighting”

More parents said “we need to keep complaining and filing formal complains with the Minnesota Department of Education”. Some other parents said “we should just start autism charter school similar to Lionsgate and others in the country”. I tried really hard to find a parent who was in content with the public education their child was getting from public schools. I simply could not find. Those that did not complain simply said “it is not good but what is the alternative”.

If you google special education attorneys and advocates – there are thousands of them. This makes me really sad because these folks would not exist if school districts did what was best for the child with autism. Normally, I get energized when I see discrimination,  inequality, differential treatments, and disparity from autism parents. Then I try to advocate in changing policies & guidelines to ensure individuals with autism are treated with dignity, are taught to their best outcome in a manner that enhances their quality of life and that of their family. And, to some extent – I have been successful but the education system task seems painfully hard and a tall order.

With this in mind, I am going to start as I usually do and say “Rome was not build in a day and a journey of thousand steps starts with one single step”. These sayings used to keep me going whenever I would get overwhelmed in my autism advocacy.

Let’s start with what the current federal and state laws say about special education and autism. What does it say, what rights does the child have, what rights do the parents have, what are the responsibilities of the school districts, what happens if they don’t follow it, what are the consequences, etc.  The education system does not fail students with autism, it is rather the people in charge of those systems that fail students with autism and their families. The question is what can be done about it and who can do it.

Stay tuned as I find out more about these layers and layers of information and start advocating to hopefully some kind of a meaningful policy change that will impact students with autism in a positive and productive manner.

As usual, above words do not reflect any candidate, agency or committee.

Idil – Autism Mom.

April 2nd, 2018 – World Autism Day

Comments Off on April 2nd, 2018 – World Autism Day

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.