This week features a very special back to back, two podcast episode release as Annette speaks with two guests who were interviewed for a recent Today Show Article called “Autism Wars.” Today’s episode features Annette’s interview with Amy S.F. Lutz, an author, vice president of the National Council on Severe Autism (NCSA), and a mom to 5 children,  her oldest son Jonah having severe autism.   Amy also became so interested in the history of autism due to her son’s issues, she went back to school and is currently seeking a doctorate in the history of medicine.  Annette and Amy speak about the “Autism Wars” article, severe autism, and extreme caregiving.

Severe Autism 

Severe autism looks very different from very mild forms of autism – this is why autism is noted as “Autism Spectrum Disorder.” Autism can be very mild on one end of the spectrum or very severe on the other end, with a wide range of levels in between.  A severely autistic individual will have profound intellectual disabilities, can be very aggressive and exhibit violent behavior, and are often very unstable and can potentially harm themselves as well as others.  Severely autistic individuals also usually require exceptionally trained staff and specific supports and programs due to the challenging behaviors they often have.  While individuals with mild forms of autism are often able to live somewhat typical lives on their own, those with severe autism generally need extra support and specific care for most if not all of their lives.  

Autism Wars Article

Most parents of severely autistic children use a common-sense position based on their experience with their children.   Unfortunately, as the Today Show article “Autism Wars” conveyed, these parents often face criticism from some autistic adults and some that view their own autism diagnosis more as an identity rather than an illness or impairment.  Some of these autistic adults tend to label parents of severely autistic children as ableists – that these parents don’t really love their children and they are only sharing things about their child to gain attention for themselves.  Some autistic adults also feel that the parents of severely autistic children are violating their children’s rights by sharing items about them publicly on social media or other platforms.  Unfortunately, most severely autistic children do not have the capacity to consent to this sharing.  Most parents respond saying if they are unable to share for their children, then their children’s story about severe autism does not get told.  The public may only then see the mild story of autism life and not the challenges those with severe autism face.  

Extreme Caregiving

Amy also goes into the topic of extreme caregiving which relates to the book by Lisa Freitag “Extreme Caregiving:  The Moral Work of Raising Children with Special Needs.”  Extreme Caregiving is the care that requires extra effort and supports and goes on longer than you would normally think.  Things like needing nursing care, constant around the clock care and needing extra supports through most, if not all of their adult lives.  It offers recognition of the challenges these parents face and supports they need to care for their disabled child.  It also states how many people in society think these parents should just “put a happy face on it” and push through it. 

Final Tips

Amy leaves us with these tips, words of advice:  If you are not living with someone with severe autism, not living that life day to day, please know that severe autism is much different than what most people generally view and think about autistic individuals.  Most will think of what they see in the media today, for instance the movie Rain Man, those on the mild end of the autism spectrum.  Often the families of severely autistic individuals need very specific intensive disability supports that those on the mild end of the spectrum do not need.  Amy would just like everyone to understand why the families with severely autistic individuals fight for their loved ones and speak out for them.

Reach Out to Amy

Amy can be contacted through her website or through the National Council on Severe Autism.  Amy’s books, We Walk, Life With Severe Autism and Each Day I Like It Better are also available.  To learn more about the Better Care Better Jobs Act Annette mentioned in the podcast, click here for a download from the United States Senate. 

For information on other topics, please also check out Special Needs Companies. For legal advice, inspiration, and other resources, visit our blog here. Similarly, you can always listen to previous podcast episodes (and be sure to leave us a review), or download our free eBook here. We are always looking for podcast guests as well so please let us know if you or someone you know, has a special needs or disability topic you would like to speak about – Contact Us! 

Listen to the full episode here!

Please Leave a Podcast Review

As Annette mentioned, please consider leaving a podcast review for Parenting Impossible – The Special Needs Survival Podcast on iTunes.  More positive ratings and reviews mean more new listeners are introduced to this informational and inspirational podcast.  Look at the bottom of this page for the purple oval that says “Enjoying the podcast?  Leave an iTunes review here.”  This will take you over to the iTunes site/app where you will be able to login and leave a review.  We really appreciate it!

You can also join our free Facebook group for the disability community, the “Circle of Care,” or watch the webinars and other speaking events on YouTube. The purpose of this community is to create a space for people to be themselves, ask questions and get support and answers, so please share these resources with your friends!

For information on other topics, please also check out Special Needs Companies. For legal advice, inspiration, and other resources, visit our blog here. Similarly, you can always listen to previous podcast episodes (and be sure to leave us a review), or download our free eBook here. We are always looking for podcast guests as well so please let us know if you or someone you know, has a special needs or disability topic you would like to speak about – Contact Us!

Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.

The post Episode 123: Shining a Light on Severe Autism with Amy S.F. Lutz appeared first on The Special Needs Companies.