As a parent, receiving an autism diagnosis for your child will produce a myriad of emotions, ranging from relief to fear and everything in between. Feeling overwhelmed is a completely natural and expected response. Likely, an autism diagnosis will create a lot of questions about the future for your child, yourself, and your family, and you may be left wondering how to navigate life from this point forward.
As you grapple with this new reality, it’s important to remember that you and your child are not alone. There is a wealth of support and resources to help guide you from the initial moment of diagnosis and throughout. Here, we will provide a guide to help lead you through the next steps and empower you to be your child’s strongest advocate.
Understanding Autism
Autism spectrum disorder (ASD) is a developmental condition that is characterized by challenges with speech, non-verbal communication, and social interaction, as well as repetitive behavior and obsessive interests. ASD impacts every aspect of a person’s life, and people on the spectrum will require some level of ongoing support throughout their lifetime.
ASD looks different for each person, so there is no “magic pill” or a one-size-fits-all approach to supporting someone on the spectrum. Recognizing individual variability is essential to creating intervention plans that are effective and can create positive, meaningful change.
Autism is a commonly diagnosed condition, with a large disparity in the reported prevalence. For example, the World Health Organization reports the figure at 1 in 100 children, while the CDC reports the number at 1 in 36.
Because of how common the condition is, a large amount of research has been conducted, which has produced many effective therapies and interventions. One example of this is Applied Behavior Analysis (ABA) therapy, which is considered the gold standard treatment option for autism. Multiple studies are showing how this type of therapy can improve prognosis, such as improvements in cognitive, communication, motor, socio-emotional, and adaptive skills and higher levels of intelligence, language, activities of daily living, prosocial behavior, and better overall prognosis.
Immediate Steps After Diagnosis
As with any big news, it is important to take time to sit with the information and allow yourself space to digest it. Don’t be too hard on yourself for whatever you are feeling. Allow yourself the time to fully process what you are feeling, being as accepting of these feelings as you can be. As your child’s advocate, you will need to be strong and steadfast for them, so taking this time to find your feet is essential.
When sharing the news with family, find a time in the day when everyone is available and free so there is enough time to ask questions. As with yourself, be open and accepting of your family’s initial reaction. First reactions are strongly fueled by emotions, and people usually come around to acceptance after dealing with the feelings, so try not to take these initial responses to heart. It’s natural for family members to have a lot of questions as they will also be processing the information. Answer the questions that you can and jot down the ones you can’t, so you can ask your doctor or pediatrician for answers. Let your family know that you don’t have all the answers, but you will work to find out, which will encourage open lines of communication.
The news of a diagnosis will probably fill you with a to-do list of things you will feel you need to tackle immediately. To help organize your list and avoid feeling too overwhelmed, think about what needs to be done immediately and with the most urgency, what needs to be done within a month, and what can wait. If you need help deciding the priorities, contact your developmental pediatrician, psychiatrist, etc., and ask them for help and advice with your list. Autism Speaks, a non-profit autism awareness charity, has created a “100 Day Kit” to help guide parents through the first 100 days post-diagnosis.
Educating Yourself About Autism
The first and most important step to understanding your child’s diagnosis is educating yourself. This is going to be fundamental for your relationship with your child as well as to be the best advocate you can be.
As with most topics, there is a lot of misinformation circulating online, verbally, etc. Even if you feel you are fully educated on the topic, it is worth checking out some reputable sites to ensure that you have a full understanding of what autism is and is not. Here is a list of sites that provide a helpful overview of autism:
When researching autism online, there will be a large number of articles on autism “cures”, which will include diet changes, sleep changes, therapies, medications, etc. These articles and testimonials speak on miracle treatments that “cured” children of autism. While these may be compelling and interesting to read, it’s imperative not to make any changes to your child’s life based on these. If there is a specific intervention or area that interests you, make a note to research the evidence base behind it and ask your doctor before implementing any changes.
Building Your Support Network
Having a support network to lean on is going to be important, for you to have help emotionally as well as to receive practical advice. Autism Speaks has compiled a list to help you find local support groups. They also have resources for support groups for siblings of autistic children, to help them have a safe and nonjudgmental place for them to express their feelings.
To get the most out of support groups, remember that the members are there to share and help and that they are judgment-free spaces. There is no obligation to share and you can go as a listener to hear other parents’ experiences. If you feel ready to share, being as open and honest as you can with your feelings and the support that you need will maximize how much you get out of the group.
You may also want to utilize the professional support available, such as psychologists and counselors. Often, people rely on these mental health professionals reactively, once they are already burnt out and feeling their worst. However, proactively checking in with therapy services can help avoid or reduce these feelings and, therefore, help you be there for your child more effectively. Carving out some time to check in with yourself and discuss what is bothering you will help you, and therefore help your family.
Exploring Treatment and Therapy Options
Several therapies are effective and associated with less severe symptoms of autism. As mentioned, ABA is a highly individualized and evidence-based therapy that targets specific behaviors. An ABA therapist will create a treatment plan that is specific and tailored to your child’s needs, taking into consideration their school and family environment. This intervention reduces the challenging behaviors often associated with ASD by teaching more functional alternatives.
As autism affects communication, speech therapy should also be a part of a child’s treatment plan, which targets verbal, non-verbal, and social communication. Occupational therapy (OT) is also an essential component, focusing on self-regulation and soothing techniques as well as teaching fine and gross motor activities.
Most children with autism will be good candidates for ABA therapy. However, several different factors can influence what type of ABA a child should receive. For example, some children benefit more from highly structured teaching styles such as DTT, whereas other children thrive from the more play-based NET sessions. The key is to monitor your child, including the progress you see within and outside of sessions, the child’s mood, etc. The same applies to OT and speech therapy. Most children will benefit from these therapies as long as they are tailored to their needs and learning styles. Parents are their children’s biggest advocates, so if you feel something is not working as it should, share your concerns with the team to evaluate options.
After receiving a diagnosis, you should share the news with your school, as there are accommodations that they will lawfully need to provide. One of these accommodations is an Individualized Education Plan (IEP), which is a plan written to support students with learning disabilities. These documents include goals for the student to work towards during the academic year, as well as what supports are needed to meet these goals. For an IEP to be effective and meaningful, a team of professionals works with families to create highly individualized goals for the student.
Financial Planning and Resources
If you have insurance, you can call your insurance company and obtain a list of in-network ABA therapy providers. If you do not have insurance, there are still many options at your disposal to access therapies. In 2014, a mandate was released stating Medicaid needed to cover “medically necessary diagnostic and treatment services”, which helped thousands of people access ABA and other treatments and therapies for their children. (Note: We have a free sample letter of medical necessity for ABA therapy that you can use if needed.)
Social Security Supplemental Income can also be used to cover treatment. Lastly, you can contact the service providers directly, as they may offer treatment on a sliding scale.
As the parent of an autistic child, long-term financial planning is essential to setting up your child’s future. Contact a financial advisor to discuss your new situation and ask about creating a special needs trust or an ABLE account. After this, consult with a lawyer with experience working for people with special needs and who is aware of the laws in your area to discuss writing a will. This will also help financially protect your child if anything happens to you.
Daily Life and Practical Tips
Work with your therapy team to come up with strategies to help create a calm and supportive home environment that will work for everyone. Each child is specific with their needs and preferences, but some general strategies that may help are maintaining routines as much as possible, giving warnings ahead of a change, and using visuals such as pictures or written schedules to help reduce anxiety about daily activities.
One of the main challenges with autistic people is communication. Always keep this in mind when interacting with your child. Discuss specific strategies with your treatment team, but typically, using a total communication approach, in which all modalities of communication are accepted, is recommended to help encourage further communication and reduce frustration and challenging behaviour.
A total communication approach means acknowledging a child’s communication attempts, including pointing, verbally approximating words, or saying a word verbally or on their communication device. You can always model a more accurate response, such as verbally saying a word or using the child’s device to show them how to say it, but not before you have acknowledged what they were communicating and praised them for it.
Another helpful strategy to reduce challenging behaviours is to have self-soothing fidgets or items accessible around the house, which will encourage the child to engage with these items and help them regulate. Items that may be of interest could be weighted blankets, fidget spinners, a small trampoline, a yoga ball, Rubik’s cubes, popping toys, etc.
As previously mentioned, taking care of yourself and avoiding or minimizing burnout is going to be essential to effectively support your child and family. Making time for other family members is also important, as this will be essential to maintain family relationships and avoid negative feelings of neglect or abandonment. As frequently as possible, try to organize some alone time with other family members, so you can nurture the other relationships in your life.
Advocating for Your Child
As a parent of an autistic child, you become their biggest advocate. The first step to becoming an effective advocate is firstly to educate yourself as much as possible and secondly to listen and observe your child. Doing your research by way of reading, attending support groups, etc, will help you arrive at meetings with questions and a clearer idea of the plans suggested to you. If you have concerns about how your child is responding to treatment, both in educational or medical settings, voice this respectfully with the team. You should receive satisfactory answers and if needed, changes to the treatment plan.
There are several laws protecting children with diverse needs in medical and educational fields. If you feel like something is off and the concerns you are expressing are repeatedly dismissed, you may want to seek advice from an advocate or attorney who can help you navigate the situation. If you simply feel that the team is not the right fit, you are well within your right to find a different team that will work better for your child.
Looking Ahead
It can be easy to start looking far ahead into the future and wonder what your child’s life will look like. The truth is, no parent can predict how their child’s life will unfold as they grow older and progress through different stages of life. It is essential to try to stay focused on the short-term daily goals and celebrate the small wins.
While it can be easy to get stuck worrying about what your child cannot do, it’s much more helpful for both you and them to focus on their strengths and what they can do. All children do well in environments that are calm, supportive, and accepting. Being patient and fostering this environment for your child will lead to these small daily wins becoming life-changing achievements.
Conclusion
While receiving a diagnosis of autism for your child can feel like an isolating and overwhelming experience, you need to remember that you are not alone. Whenever you feel ready, there is a wealth of support waiting for you, whether it be books, websites, podcasts, or local or online groups of parents who have felt or are feeling exactly as you are now.
Your parenting journey with your autistic child might be a little different from what you had expected. There may be more hurdles to jump over and more puzzles to solve. However, at the basic level, your role is still the same. With your ongoing love, support, acceptance, and advocacy, your child can go on to lead a happy, meaningful, and fulfilling life.
