Author | Health Care Provider
If there is one piece that is paramount in the autism journey, that is understanding. Understanding opens the door to a plethora of solutions during your journey of raising a child with autism.
Raising a child with autism is like journeying together (you and the child) towards a destination that sets you (parents/caregivers) many years back. Sometimes it is a smooth ride and sometimes it is like being on a rollercoaster.
This article attempts to cover the paramount role of understanding in autism, self, and systems (school, society, laws) with a holistic approach in which parents can become better equipped for their journey ahead.
Autism is a developmental difference or a delay in one or more areas. No two diagnoses are alike, however, the core symptoms overlap. These differences are noticeable in kids through infancy. Usually, by the age of 3, autistic traits are distinguishable with linguistic, social, emotional, and behavioral delays. Parents generally go through an eclipse of emotions and may get stuck on how to move ahead. Usually, these churns of emotions could disturb the person or their family’s well-being. It becomes crucial to pass out of this phase sooner than later, then they can get their child screened and diagnosed which is only stepping into the Autism journey. In other words, the earlier the understanding and acceptance, the better the prognosis.
With an alarming rise in autism, it is a relief to see the expanding awareness, resources, networks, support providers, and service providers. Still, many families are stranded due to other limitations (financial/emotional/family- supports/fear/education levels/immigration status).
In the autism journey, there are a number of aspects or pieces that need to align for the journey to happen. The aspects or pieces interact among themselves or reflect one another which would shape the autism journey. The aspects that are abstract and are not easily visible need to be observed with a lens of understanding. These aspects or pieces are categorized sequentially below.
Piece #1 Develop Bonding & boosting confidence
It is here that one needs to step up and develop bonding with their kid. One needs to go in-depth and ask questions for planning. The journey begins with the understanding of autism and its short-term/long-term impacts.
Understanding autism and a child’s autism would make the underlying friction eased out. We define the diagnosis and not get defined by the diagnosis. This should be the same motto the kid needs to carry in the years to come. This not only strengthens the bonding with the kid but also helps in setting realistic expectations. Assuring the kid that we will be there for them would boost the kid’s confidence. This phase would be seeking out services such as Speech/OT/ABA for the kid and other services which would enhance the skills acquired in one or more than one area. It might take trial/error to find the right provider.
Sometimes a longer waitlist at a service provider’s office is a reality. It is a fact that these services are generally expensive and have financial implications. There are insurances that cover these services at 90% -100%.
Piece #2 Balance & Awareness
The next step will be to understand oneself, then to construct the family balances. It is not only hard but crucial to accept and embrace your kid’s diagnosis. Usually, parents slip into a grief cycle that has its own effects. Parents need to take care of their mental health which is a crucial piece to the autism journey. For an unknown reason, this has often been overlooked. Often parents might not be aware of the importance of their mental health nor other factors such as finance/lack of support/time that contribute to it.
One needs to understand the cycling effect of a parent’s emotional well-being and how it reflects on the kid and vice versa. Only the parents can reverse the negative effects. We are blessed with a number of support groups on social sites such as Facebook, WhatsApp, etc. Staying connected with other parents/caregivers would be a relief which also promotes awareness.
Piece #3 Understanding the systems/interactions
The next piece would be understanding the schools/systems and IEPs. Many times parents get stumped at the IEP with schools and their policies which often makes them feel derailed and left with questions. It is here that parents need to develop a profound understanding of school systems (society, Laws, funding) and their interactions of how one reflects the other. The sooner parents start understanding their rights, the sooner they can handle the IEP better, lessening the emotional drain.
We have a number of resources around offering training on these topics; addressing the Qs: who/what/where/when/how, dynamics/SMART goals/LRE). Parents/Caregivers need to have a grasp of their rights and laws which would help in advocacies. The wise parent gets equipped to handle IEPS and school systems smartly. This is the path to developing a Roadmap.
Piece #4 Building – Roadmap
This would be building a short-term and long-term roadmap which we could frequently do as an add-on. One can be creative in developing a road map that covers these topics below. These can be stretched including your kid’s picture, describing your kid, sequentially adding success, challenges, achievements, short-term, and long-term goals. This gives a higher clarity while navigating through the journey. When the goals are achieved we can add new ones.
Piece #5 Patience, Perseverance and a sportsman spirit
Patience, perseverance, and having a sportsman spirit will pay off and lead you a long way to your parental aspirations. There is no one way or one particular method to reach the destination. Sometimes it might take longer than thought of, sometimes you might reach it earlier than expected. Sometimes it might cost more than planned and you have to reset the pieces, but at least now you know you’re on your journey. You (parents) know what to anticipate as you are empowered and equipped.
Piecing it up together, with an unwavering spirit you can be on your journey to understanding your kid’s autistic self and the interactions of the system around them. By setting realistic expectations, you can navigate smoothly to make your autism journey the success that you aspired it to be!
About Priya Pasumarthy
Priya Pasumarthy is an author and a health care provider. She holds a Master of Science degree in Marine Biology. She lives with her family in California. She loves adventures; so far, her favorites include bungy jumping in New Zealand and hiking the Hverfjall Volcano in Iceland. Her hobbies include cooking, shopping, reading, writing, watching films, and horseback riding.