Once the words autism is uttered to you, your whole perspective on the world changes. Especially if you are a parent, and you have just found out your child is autistic. Parenting is tough, and when neurodiversity is in the mix, the challenges evolve into unknown territory for most. As for late diagnosed adults, it may come as a relief or an answer to a lifelong question. Nevertheless, it gets daunting.
Receiving an autism diagnosis for yourself or a loved one can be a significant moment, and the first 100 days following the diagnosis can be crucial for understanding the condition and initiating appropriate support and interventions. Here are some essential steps to consider during this time. Please note that these tips are more appropriate for parents or caregivers with children recently diagnosed with autism.
Educate Yourself
Take the time to learn about autism. Understanding the characteristics, strengths, and challenges associated with autism will help you make informed decisions about how to support and advocate for the individual with autism.
Seek Professional Guidance
Consult with specialists, such as developmental pediatricians, child psychologists, or autism specialists. They can provide valuable insights, recommend appropriate therapies, and assist in creating a comprehensive plan that is individualised. Other professionals with specific skills for interventions include Occupational Therapists, Speech Therapists and Special Educator. Each of these professionals are trained in their respective areas and play different yet sometimes overlapping roles in the various interventions for someone with autism.
Join Support Groups
Connecting with other parents, caregivers, or individuals with autism can be incredibly beneficial. Support groups can provide emotional support, practical advice, and a sense of community with others who are experiencing similar challenges. A sometimes untapped area by caregiver and parents are autistic adults. There are also support groups meant for autistic adults where parents / caregivers are allowed to become members, ask questions or just view posts.
Early Intervention Services
This usually applies to children. If the individual is young, early intervention services can play a crucial role in addressing developmental delays and supporting their overall development. These services may include speech therapy, occupational therapy, or other approaches that support early intervention. It is important to find an approach that does not harm and put the autistic individuals needs at the center of everything.
Advocate for Education
If the person with autism is of school-going age, familiarise yourself with their educational rights and entitlements. Work with teachers, counselors, and school administrators to create an Individualised Education Plan (IEP) tailored to their needs. Not all school are inclusive and not all inclusive schools understand inclusion. Take your time to find the right fit, Most importantly, the learning environment must be supportive to the learning needs of the individual.
Create a Safe and Supportive Environment
Make necessary adjustments at home to create an environment that is accommodating and supportive for the individual with autism. Minimise sensory overload and provide clear routines to help with predictability. Ensure anything dangerous is kept away, securely too. Especially at home, remember that your home is your child’s home too. Design it to be their safe space. Where possible, have a designated calm room or area with very low or no sensory stimulation.
Consider Dietary and Sensory Needs
Some individuals with autism may have specific dietary needs or sensory sensitivities. Consult with healthcare professionals or occupational therapists to address these concerns effectively. It is very important to only apply extreme dietary measures with proper clinical evidence. Ensure that dietary restrictions are absolutely necessary. Remember, sensory needs are there for a reason.
Observe and Document Behaviors
Keep a journal or log of behaviors, triggers, and progress. This information can help you and healthcare professionals gain insights into patterns and identify areas that need extra attention. Once you notice certain stimulants that trigger certain things, make the necessary adaptations to reduce and overstimulation in the environtment. It is important to remember that meltdowns are not done on purpose and is beyond the autistic person’s control. Where triggers can be reduced or eliminated completely, always choose that option.
Encourage Social Interaction
While individuals with autism may struggle with social skills, it’s essential to provide opportunities for social interaction. This could be through playdates, social skills groups, or other structured activities. The key here is to encourage and not to force it on them. Allow them the space to feel safe and limit social interactions when they feel uncomfortable. Often times, parallel play and co-existing alongside another child of a similar age is a win already. Eventually and over time, social interaction might follow.
Take Care of Yourself
Caring for someone with autism can be challenging and emotionally demanding. Make sure to prioritize self-care and seek support when needed. A caregiver’s well-being is crucial for providing the best possible support. Find your tribe and if you can’t find one, create your own.
Remember that autism is a spectrum, and each person’s experience with it will be unique. Tailor your approach to the individual’s specific needs and strengths. The first 100 days are just the beginning of a lifelong journey of understanding and supporting individuals with autism.
If you a new to autism, learn some basics about autism from this video
Source: Sprouts YouTube Channel
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