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Clinical psychologist, author, and parent, Dr. Robert Naseef joins us from Philadelphia. He has run countless workshops with fellow fathers, has worked in the Middle East and Southeast Asia with families with children and adults with autism and developmental differences. He does work with adult self-advocate, Stephen Shore, and is well-known in this area of ‘ambiguous loss’. I heard of Dr. Naseef from seeing a presentation of his in my certificate courses in the Developmental, Individual differences, Relationship-based (DIR) Model from the Interdisciplinary Council on Development and Learning (ICDL).
Autism Acceptance with Dr. Robert Naseef
Dr. Naseef was a teacher when his son was born. Upon his son’s autism diagnosis he felt alone and this led to his creation of support groups for other fathers of autistic children and eventually to his becoming a psychologist. He says that although so much more awareness about autism is available today, parents still have the same questions and reactions that he had in the 1980s. People still ask, “What caused this? What’s the future going to be like? Is this going to go away? Will my child be independent, have a job, have friendships?“
Where screening and diagnosis is available, the autism rate is about 1 to 1.5%, Dr. Naseef says, so often when he talks to parents in workshops or in his office he asks a series of questions:
- What was it like when you first held your child for the first time? (He wants to put them in touch with the excitement and love that is still there. This is still the child they were so excited about.)
- What is your story up to and including your diagnosis? (There is usually shock and bereavement and sometimes even relief because they knew something was up and now they know what to call it. Dr. Naseef like the DIR approach of finding out where are the parents at, where are the siblings at, where is the family at?)
- What does the word ‘autism’ mean to you?
- Tell me what a day with your child is like? What does a good day look like?
Dr. Naseef wants to discuss these topics before he gets into the challenges because he wants to set the stage for how we can make a difference, which is really what everybody wants.
I asked Dr. Naseef to comment on my impression that the reason why parents tend to gravitate towards the idea that something is wrong or needs to be fixed is due to the challenges associated with autistic behaviour, such as screaming, throwing, refusing, etc. that neurotypical children also do, but that we don’t understand why due to that lack of understanding in the way autistics communicate.
Dr. Naseef’s son stopped talking around 18 months of age and never started again. He also has a severe intellectual disability. He lives in a group home and attends a day program. When he was a toddler, this was Dr. Naseef’s worst nightmare, but what’s true is that he is happy almost all of the time and this gives him comfort. His son has taught Dr. Naseef a lot. He is who he is and he has helped Dr. Naseef be a better version of himself, which has been transformational, he says.
“In my professional work, I want to help people to accept and love the child they actually have no matter if they’re a little different or a lot different, and to be the best versions of themselves, and to have the best versions of their family that they could possibly have. In that way, we can have a meaningful and productive life when we let go of the typical or the normal and embrace the neurodiversity, which really describes the human condition.”
Unpacking the “Why?” and “What if…?“
It’s just human for parents to think of what might have been, Dr. Naseef says. But too much focus on this can get in the way of your relationship with your child. Jim Sinclair wrote an essay, Don’t Mourn for Us that says that the grief that parents have over the stress that they go through over not having the child they wished for is ok, but that we, the individuals with autism, are not mourning, so don’t mourn for us; step up and do your job.
What Dr. Naseef learned from the DIR/Floortime workshops and conferences he attended when his child was younger, and from developmental literature in general, was that all children need enthusiastic, positive, energetic parents to help them grow. But as parents, this grief can get in the way, so we need support: support from each other, and support from the professionals working with our kids. Our feelings do make sense. Our reality is difficult.
Talking about challenging behaviours, some of them are traumatizing. Seizures are traumatizing, for instance. We can go through life on edge waiting for the next one. But there is also post-traumatic growth, Dr. Naseef says: the growth we have in life in dealing with difficult experiences. And we now have such wonderful insights from the articulate self-advocates who have helped us understand so much about how autism can be disabling for some and not for others and what their experiences are like.
The Concept of Ambiguous Loss
We may have heard of the stages of grief, but the problem with that (Denial, Anger, Bargaining, Depression, Acceptance) was that this work was about acceptance of death. Our children did not die. They are very much alive and spirited. Our forward process is loving their difference and accepting them for who they are, helping them be who they can be, changing the changeable, and letting go of the rest. It’s ambiguous and uncertain because we don’t know what the future holds.
There’s an ambiguous loss: the child isn’t the child we expected, but they are still there and you still love them. We have to balance reality and possibility. On top of that we have others who pity us, misunderstand our situation, or judge us which adds an extra burden. But parents can really find support in each other by sharing stories and celebrating ‘inch’ stones with each other about their children.
The 3 'A's
Autistic self-advocate Stephen Shore calls for awareness, acceptance, and appreciation so you can be the energetic parent your child needs.
A Common Humanity
Many behaviours that we see in autistics are simply human behaviours. When we understand that, we can find common ground in our common humanity. When there are so many such behaviours in our child, that makes it diagnostic. But this all made Dr. Naseef more patient, and a better listener and observer, picking up non-verbal cues and tuning into his son’s needs in a way he otherwise would not have. He really had to really learn that not everything is fixable. Sometimes we need to just ‘be’.
Dr. Naseef says that we want to aim to find peace with things the way they actually are and live with everyday challenges with everyday comfort in the best way that we can. Aim to make a difference instead of fixing or making it go away. Too much trying to fix spoils the loving, and the loving drives everything. It is about connection and the Relationship. Some of these experiences really do challenge us at the core, he says, but are also the lessons that teach us what we need to learn to grow.
Dr. Naseef Resources
Autism in the family: Caring and coping together
Voices from the Spectrum: Parents, Grandparents, Siblings, People with Autism, and Professionals Share Their Wisdom
Special Children, Challenged Parents: The Struggles and Rewards of Raising a Child with a Disability
TEDx: How Autism Teaches Us About Being Human
Beyond Borders: Our Common Humanity
Autism Acceptance and Making a Difference
(Also Dr. Stephen Shore’s 3 A’s of Autism)
Neurodiversity is Trending: A Commencement Speech
Screentime for Children: No Easy Answers
Supporting Dads in the Autism Community
Who sits down first in a job interview
Thank you to Dr. Robert Naseef for taking the time to speak with us today. I hope you found this podcast helpful and informative. Please consider sharing it on Facebook or Twitter and if you have any related experiences, comments or questions, please feel free to post them in the Comments section below.
Until next time… here’s to affecting autism through playful interactions!