As a parent with a child newly diagnosed, it can be easy to ask yourself, “My child was diagnosed with autism – now what?” This is a reaction that is to be expected and can be followed with overwhelming feelings and a lot of questions.
Families can find a lot of support, resources, and services by talking to their child’s doctor and team of therapists, teachers at the child’s school, as well as other parents in the autism community.
Communication between the child’s team and support groups will prove helpful. Your child’s team could consist of the child’s doctor, mental and physical health professionals, and special education or other services through your child’s school.
However, what are your first steps as your child gets their diagnosis?
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My child was diagnosed with autism – now what?
Families play a large role for autistic children. They have been the ones who have witnessed challenging behaviors, noticed differences in the child’s development, know the autistic child’s strengths, and have been there when they learned new skills.
More often than not, families are left confused and with many questions after their child’s diagnosis. What should they do next? How can they help their child? Here are some steps you can take.
Step 1: Meet with the team
The child’s parents will meet with the team and they will discuss the child’s development, strengths, and goals to work towards. The parents will also receive information on community support and services that are available for the newly diagnosed autistic child.
The meetings are as frequent as the parents and team decide. This is a great time to discuss any questions or concerns.
Step 2: Consider early intervention
Depending on when your child was diagnosed, there are early intervention services available to support the early diagnosis of autism spectrum disorders. These help jump-start your child’s therapies and other services that they may qualify for.
Step 3: Start working on their individualized plan
When plans and goals are figured out, they are then put together to form a very individualized plan for your child. Each part and therapy are discussed at the initial meeting and at each decided-upon meeting afterward.
Step 4: Consider individual evaluation
There may be a need for an individual evaluation following the full assessment that your child already had to receive a diagnosis of autism. These individual evaluations would depend on the practitioner.
For example, an assessment for speech, behavioral, or occupational therapy can establish a baseline for the therapist to develop a specialized plan for your child’s development based on discussed goals.
What can I do to help my child with autism?
Parents can do a lot to help their autistic child through therapies and services. They can learn a lot either by observing therapy or through more hands-on activities.
Attending autism parent support groups, reading books on autism by parents, autistic individuals, and professionals, and using skills from observation and therapies like ABA can build your confidence and help your child. Your child’s team members can answer questions and offer beneficial suggestions for your child and family.
Through my experience, therapists strongly suggest that parents continue what the child is learning during a session at home. They generally give the parent and family the tools and support to help the process.
That is one reason that parents, caregivers, individuals, and the team come together to create the goals that will shape the therapies and services for the child’s growth and success.
Where can parents of autistic children find support?
There are many different ways that parents can find support so that they have the skills or can start building the skills to best help their child’s development.
The support can be very individualized, depending on the specifics of their child’s diagnosis, or it can be broad and cover a spectrum, depending on what the parent is looking for.
Support groups
There are many support groups for families of individuals with autism, including in-person meetings, early intervention playgroups, sibling support groups, Zoom sessions, social media groups, and educational programs through various therapies.
Parent education
Parent education can vary and is dependent on what is available in your area. There are parent groups that provide special needs education, ranging from early diagnosis to services available for autistic adults and everything in between.
There are also conferences specific to parents of autistic children and online courses, like those available through Autism Parenting Magazine throughout the year.
Books
There are numerous books written by parents, autistic individuals, different practitioners like occupational therapists, etc. These are great resources and I can personally say that I have learned a great deal through reading from a variety of authors.
Books are a great resource for information, such as sensory processing, stimming, and hand flapping. They also provide tips on the best sensory toys for vacations and ways to understand and support your child’s behavior.
YouTube
There are a lot of people who have video blogs or vlogs about their family and what autism means to them. There are autistic individuals who talk about different aspects of autism and ways people can help and better understand them as individuals.
No one-size-fits-all
We have discussed what to expect after your child has been diagnosed, ways to support your autistic child, and what is available to support you, as a parent.
It is important to note that the information and services available are specific to your location and talking to your child’s doctor and team will be the most beneficial. That is because they will know what is available in your area and for your specific journey.
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As no two individuals with autism are the same, neither is their journey. The information I have shared can be a good conversation starter and gives families an idea of some services and support that may be available in their area.
The most important step to take is to start asking questions because, typically, if your doctor or team are unable to answer them they should be able to point you to someone who can. Also talking to a support group can bring an array of services and support that could best support your child and family.
FAQs
Q: How do I cope with my child’s autism diagnosis?
A: Seek support from other parents, join support groups, and educate yourself about autism. Taking care of your mental health and connecting with professionals can also help you navigate this journey.
Q: What is the next step after being diagnosed with autism?
A: The next step is to create a support plan, which may include therapy, educational interventions, and connecting with support groups. Consult with your healthcare provider to tailor resources and services to your specific needs.
Q: What do you say after an autism diagnosis?
A: Offer reassurance and support, emphasizing that the diagnosis can lead to better understanding and targeted help. Focus on the child’s strengths and the available resources to assist their development.
Q: What is a positive outcome of autism?
A: Autistic individuals often have unique strengths and perspectives that can lead to exceptional talents and abilities. Many contribute significantly to their communities with their distinct ways of thinking and problem-solving.
Q: Should you tell an autistic person they are autistic?
A: Yes, it is important to be open and honest, providing information in an age-appropriate and supportive manner. Understanding their diagnosis can help them make sense of their experiences and access appropriate support.
References:
Aspasia Stacey Rabba, Cheryl Dissanayake, Josephine Barbaro, Parents’ experiences of an early autism diagnosis: Insights into their needs, Research in Autism Spectrum Disorders, Volume 66, 2019, 101415, ISSN 1750-9467, https://doi.org/10.1016/j.rasd.2019.101415.
Crane, L., Chester, J. W., Goddard, L., Henry, L. A., & Hill, E. (2016). Experiences of autism diagnosis: A survey of over 1000 parents in the United Kingdom. Autism, 20(2), 153-162. https://doi.org/10.1177/1362361315573636
Makino, A., Hartman, L., King, G. et al. Parent Experiences of Autism Spectrum Disorder Diagnosis: a Scoping Review. Rev J Autism Dev Disord 8, 267–284 (2021). https://doi.org/10.1007/s40489-021-00237-y
Milbourn, Ben, Falkmer, Marita, Black, Melissa H., Girdler, Sonya, Falkmer, Torbjorn and Horlin, Chiara. “An exploration of the experience of parents with children with autism spectrum disorder after diagnosis and intervention” Scandinavian Journal of Child and Adolescent Psychiatry and Psychology, vol.5, no.3, 2017, pp.104-110. https://doi.org/10.21307/sjcapp-2017-014
Jacobs, D., Steyaert, J., Dierickx, K. et al. Parents’ views and experiences of the autism spectrum disorder diagnosis of their young child: a longitudinal interview study. Eur Child Adolesc Psychiatry 29, 1143–1154 (2020). https://doi.org/10.1007/s00787-019-01431-4
