Autism Diagnosis? Now What?

I’m sure you got a lot of information when your provider diagnosed your child with Autism. It would be normal to be feeling overwhelmed, sad, guilty, relieved, hopeful, or all/none of these emotions. It may be difficult to know how to take action or what next steps are. Hopefully your provider made you feel like they are part of your team and they are open to your questions. If you did not get all of your questions answered when you initially received the diagnosis, reach back out to the provider! Write your questions down to make sure you get the information that you need. While treatment recommendations following a diagnosis are likely to vary significantly based on the child and their presentation and needs, some common recommendations or treatment modalities are reviewed here.

If you haven’t read my previous blogs, a quick note about language. Society has largely adopted “person first” language as being politically correct. Here, that would be “person with Autism Spectrum Disorder” or “person with Autism.” Many doctors have also been trained this way. Many Autistic people though prefer “Autistic person” or “Autistic brain.” I am using the latter, because an Autistic person’s right to dictate how other people refer to them is important to me. 

Environmental Supports

There are some basic ways to modify environments to be more supportive of Autistic individuals. In general, structure, consistency, and predictability can help increase feelings of safety. When we feel safe, we can better regulate our emotions and behaviors. Clearly communicate schedules and plans, provide advanced warnings for changes, and respect an Autistic individual’s need for sameness. Access to preferred activities is also immensely important. Autistic individuals can feel exhausted by typical school days or by socialization with neurotypical people. Access to their preferred activities or topics of interest helps them build their energy back up and feel fulfilled.

Educational Supports

Some children might benefit from formal educational accommodations in order to support their participation in the school environment. There are two primary ways of getting educational accommodations in a public school setting: a 504 Plan and an IEP. Stay tuned for the series that is all about educational accommodations! What I can review here, is basic accommodations that may be helpful for Autistic individuals, which may include the following:

• access to a visual calendar or schedule
• warnings for transitions or changes to the schedule (including substitute teachers)
• clear and consistent expectations for behavior and work completion
• frequent breaks to manage sensory input or overwhelm
• access to noise canceling headphones
• preferential seating to manage sensory input and overwhelm
• access to calming objects (e.g., stuffed animals or objects that the child is attached to)
• the ability to transition earlier or later than other students
• a private space for lunch
• alternatives to groupwork or whole class discussions/participation
• alternatives to assemblies and pep rallies
• intentional relationship building with supportive adults
• participation in a social skills group at school

Social Skills

If your child has received a diagnosis of Autism, chances are that social skills training or social skills support has been recommended. Autistic people read and respond to social situations differently than neurotypical (non-Autistic) people do. Autistic people do not need to be taught how to behave in a neurotypical way in social interactions. Instead, it can be more helpful and supportive to talk about what and why a certain social behavior is expected in the first place, leaving it up to the Autistic person how they need to respond. Let’s take the example of eye contact. Some social skills training may involve increasing the child’s eye contact, which can actually be quite uncomfortable and painful. Instead of focusing on prompting for eye contact, it can be more helpful to discuss why eye contact is important in the first place for neurotypical people (i.e., it shows that we are listening and/or interested) and what other ways there might be for showing that we are listening or interested (e.g., responding verbally or nodding our head). Social stories may also be recommended as a way of exploring social expectations and responses.

Speech and Language Support

Depending on your child’s profile, speech and language support may be recommended. Speech and language support can help focus on certain aspects of social communication such as turn-taking in conversations and asking questions, as well as any other language differences that might be impacting a child’s communication skills. For children who can’t use language to communicate, it can also help support the use of technology for communication purposes.

Occupational Therapy

Occupational therapy may also be recommended. Occupational therapy may help with managing sensory input, learning additional strategies for regulating emotions and behavior, and improving the ability to complete tasks of everyday living (e.g., brushing teeth, feeding skills, and self-care). The occupational therapist can also work with you on identifying ways to practice these strategies at home.

Applied Behavior Analysis (ABA)

Potentially the most controversial form of intervention of all, Applied Behavior Analysis has an intense history with the Autistic community. Research on ABA’s efficacy has historically revealed positive results, though some recent research suggests only minimal improvements. And, there are some Autistic people who have shared traumatic experiences with ABA. Some Autistic people have shared that they felt like the goal of ABA was to change their external behaviors to make them appear less Autistic, rather than to promote feelings of worthiness and self-esteem and help them navigate challenging situations. Moreover, many Autistic people have argued that research demonstrating ABA’s effectiveness and positive outcomes is often based on outcomes that benefit neurotypical people more than Autistic people. All of this said, ABA can be life changing for some families. Make sure to ask any questions you have to your ABA provider and that you express any concerns that you have to your provider. Look for providers that offer a warm, individualized, flexible, and compassionate approach. You and your child should feel heard and like equals in designing and participating in the interventions. Referrals from trusted providers can also help point you in the right direction.

Below is a good summary of some Autistic people’s perspectives on treatment:
https://autisticadvocacy.org/policy/briefs/interventions/

This is also a great summary of ABA and the current criticisms of ABA:
https://childmind.org/article/controversy-around-applied-behavior-analysis/

Psychotherapy (talk therapy)

One of the most powerful things we can do for any child is to be a supportive, affirming, patient, and curious adult. Autistic children need and deserve this, and individual therapy can be a space for this. Therapeutic goals then, may revolve around empowerment, self-esteem, self-advocacy, facilitating a greater self-understanding, and communication of internal experiences. When developing therapeutic goals for Autistic children, parents and therapists need to be thoughtful and intentional around what the specific goals are and who those goals benefit. The focus of therapeutic goals should always be focused on what is in the best interest of the Autistic child, and not how to make the child appear and act more neurotypical in their family system.

Parenting Support

While individual therapy can be a powerful experience for Autistic children, parenting support can be equally, if not more, powerful. Informed parents who have support: processing their own thoughts and feelings around their child’s diagnosis, advocating for their child’s needs, and sustaining an affirming and supportive environment at home, give their child the best shot at a happy and fulfilling life. Ask for the help that you need.

Below are a few options for parent groups in Colorado:
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Ability Connection Colorado:
https://www.abilityconnectioncolorado.org/p2p-co/

Federation of Families for Children’s Mental Health:
https://www.coloradofederation.org/

Autism Society of Colorado:
https://www.autismcolorado.org/support-groups

Other Supports
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Some families find benefit from other supports not listed here, including, but not limited to, diet changes, herbal supplements, equine therapy, neurofeedback, and mindfulness practices. While the research on these topics is more limited or emerging, we should all respect a family’s desire to do what works and to alleviate pain and suffering for their child.