Raising a son with ASD set me apart from neurotypical parents quickly and a bit harshly. Sam is now 29 years of age and albeit a long journey, he is doing far better than doctors predicted or nay-sayers nay- sayed in those early years. While we know the challenges, it is those in the ASD community (largely Moms), who see the undeniable potential. We see the gifts and learn from the unique way of seeing the world through the eyes of our loved ones wired uniquely with Austim.
It is of this mindset that I recently learned of the term Takiwātanga, a word coined by linguist and educator Keri Opai (Te Atiawa, Ngāti Ruanui, Ngāti Te Ata, Waiohua, Ngāti Porou) meaning ‘in his/her own time and space’. “We are moving away from viewing autism as a ‘dis’-ability as it is currently perceived from a western paradigm. Through the wānanga series, the word/kupu ‘takiwātanga’ is used extensively as we see it as a mana-enhancing term rather than a deficit term,” explains Dorothy Taare-Smith (Ngāti Porou) education facilitator for the Taonga Takiwātanga Charitable Trust.
Hurdling Together
I had moved away from the notion that my son Sam was “disabled” long ago. He has gifts that I cannot even begin to fathom nor able to. He is far ahead of the crowd on these gifts. By recognizing the challenges he faces daily, we continue to hurdle together as best as we can. He lives independently, financially, and is employed successfully. All this we were told would not be possible by the very Doctors diagnosing him. It is a mindset really, from thinking Autism is shameful to a positive mindset.
After all, it was Dr. Gail Saltz in her book “The Power of Different” that reveals how medical science is discovering positive traits (almost super human) that are programmed in the mind of those on the Spectrum.
A Closer Look at Takiwatanga
Taking a look at the the Takiwātanga way of thinking and training is worth a look. It is what we as parents believe, that our child diagnosed with autism as gifted, or taonga rather than a deficit as often regarded in western culture.
Listed below are the four learning objectives that were developed for the wānanga.
- To build knowledge and understanding of takiwātanga and change the mindset of how takiwātanga are viewed.
- To build education practitioner confidence to support whānau with takiwātanga.
- To strengthen whanaungatanga: building community connections and supports.
- To increase understanding of children’s rights in the context of education and the responsibilities of school services.
Thought-provoking and affirming at the same time. The Trust aims to educate and raise awareness about an indigenous perspective of autism. The marae-based wānanga programme was developed by Dorothy in partnership with the Ministry of Education. Full article here: https://gazette.education.govt.nz/articles/takiwatanga-in-your-own-time-and-space/
The Great Eustacia Cutler
Jennifer Allen, Eustacia Cutler, Samuel Allen
We have other examples of such varied viewpoints. Of course, Eustacia Cutler, the Mother of Dr. Temple Grandin, has been living and touting a different perspective on Autism for many, many years! Her boldness standing up against the negative mentality of “sweeping autism under a rug” during the 1950 – 60’s is an inspiration to all Mothers today.
The pressure to institutionalize such a child came from doctors and family members. But when the pressure came from her husband, she went completely against the grain for the sake of her child, Temple. I was fortunate enough to have met and interviewed Eustacia on several occasions. Here is an expert from one of those enlightening talks aimed directly at us Mothers. Her mind ever-sharp and in the moment allowed for many ‘ahh’ moments to walk away with. Here are just a few:
Ambivalent Fathers
Eustacia spoke of a man she had met with a withered arm and hand. The man spoke of his absent and abusive father who later in life admitted his son’s disfigurement had frightened and intimidated him. His father felt that since he could not “fix” the disability, he rebuked his own son. This is a problem that needs repair in many homes, and Ms. Cutler explained that this fear may be a reason for so many divorces.
Empathy vs. Sympathy
Understanding the difference helps explain autism. She went on to explain that empathy is when you can actually feel the person’s pain when they cut their finger, as opposed to sympathy with is more of a learned behavior or intellectual act. People with Autism/Aspergers can only learn social behavior by imitation. Eustacia discussed “mirror neurons” and recommended researching the studies of neuroscientist Vilayanur Subramanian Ramachandran, who is one of the first to suggest that a loss of mirror neurons might be the key deficit that explains many of the symptoms and signs of autism spectrum disorders.
Mother’s Lost Identity
The identity for both mother and autistic child can be shortchanged. From a neurological standpoint, “If my child does not know who I am…then who am I?” Eustacia posed this question more than once to make the point, if not strongly suggest that Mothers need to build their own identity. This was my personal favorite portion of her talk! You as the mother must not morph into your child and his/her autism or you won’t exist yourself. This is a strong statement that bears reading more than once. You cannot help your child if you lose your own identity, in which case both are lost. Eustacia’s suggested solution is her experience, and is discussed in the next topic.
Give to community and community will give to you
Eustacia spoke of her life with Temple. By evenings she gave her time to community theatre, and Sunday mornings to teaching Sunday School, and the people surrounding her gave back. Temple then had exposure to others who included her, or at the very least continued normally around her. These interactions offered insights and external exposures to Temple, that otherwise she would not have experienced.
Tom Mead, whose severely autistic son was afforded a life outside of ‘all things autism’ when Tom became involved in his community experienced the same. He served on the school board, and contributed to the town’s political scene. Tom’s involvement with his community offered his son a normalcy and balance outside a world that just consisted of autism.
We as mothers to a special child, are all connected through tears, fears and overwhelming joy each time our child reaches a milestone we thought unobtainable. Isolation melts each time we feel the presence of a kindred spirit and that day being near Ms. Cutler was no less a marvel for that very reason. I had not met her before that day yet I felt I was home alongside her. I felt that she did the same.
Perhaps that connection was with each and every mother attending that day but it was definitely with me sitting alone beside Eustacia in discussion about theories and absolutes involving our autistic children and the world around them. (I love the photo above as it perfectly reveals two mothers connecting, and the beautiful mind of my son Sam!)
For this end, Ms. Eustacia Cutler represented the road we all want to travel. To have fought, (and did this woman fight!) persevere and most of all, know that your child is living the best life possible under their diagnosis. Or take this newer philosophy of Takiwātanga, meaning “in his/her own time and space”. Both offer hope and mindset against negative dialogue. I end with a quote from Megan Gladwell, “The way we talk to our children become their inner voice.” Indeed.
by: Jennifer Allen
A graduate of Abilene Christian University, Jennifer had a long career in TV Broadcasting. Upon learning her oldest son Sam had a form of Autism called Asperger’s Syndrome, she left her career and became a full-time mother to both of her sons. Jennifer elicited the participation of her family and together they produced several independent programs including a children’s animated series titled Ameriquest Kids, as well as a documentary and book titled, Coping to Excelling: Solutions for School-age Children Diagnosed with High-Functioning Autism or Aspergers Syndrome. She formed the nonprofit Asperger101 to provide on-going free resources related to ASD at Aspergers101.com and has implemented the Texas Driving with Disability Program and continues to grow the statewide initiative today. She and her husband have recently retired to their property in the Texas Hill Country.
