As an autistic human and a therapist, I have many thoughts on this topic. Neurodiversity is a buzzword and on a lot of people’s minds. People spend a lot of time scrolling TikTok, and it’s not uncommon to stumble upon #autismtok and to realize that they might fit some of the criteria. If you did, you are not alone. That is the story of many of my current clients. After having this revelation, there is often a sense of panic: what do I do now? Am I a bad parent for missing the signs for so long?! If you are having these questions and feeling self-doubt, please know that this is normal. Let’s dig in so you know what you can do for you and your child.
Initial Assessments and Getting a Diagnosis
This is the first, and arguably most difficult step. Mental health therapists are not encouraged to give a diagnosis of Autism Spectrum Disorder unless they have had specific training on providing assessments, such as the ADOS. Even though I am an autistic person and I work with autistic humans, even I do not feel comfortable giving a diagnosis without having a client go through a full evaluation. This also can make getting the diagnosis difficult.
The waitlist for psychological testing tends to be quite long, especially for children. Psychologists must be qualified to provide an autism evaluation and have to be qualified to work with minors. Even then they can often only work with a certain age range, which is hard if you are looking for an evaluation for a two-year-old. Many insurance companies will cover psychological testing, but only if there is a specific appointment for a Prior Authorization Diagnostic Assessment. This can be tedious for both parents and clinicians alike.
Due to the length of waitlists for psychological evaluations, parents often opt for their child to do an assessment through the school. This makes a lot of sense: if you suspect your child is autistic, then they are probably having issues at school. They will need a diagnosis at school to receive an IEP and receive supports. However, these tests are minimal, and they are not as lengthy as a psychological evaluation. Children often do not receive an official diagnosis.
Given this long waitlist, I often recommend my clients do the following: get an initial evaluation through their school, and then in the meantime get on as many waitlists as you can. Some companies will even have a cancellation list for people who have more flexibility to take an appointment if someone else cancels at the last minute. Please ask to be put on that cancelation list, especially if you are experiencing a crisis (such as if your child is having difficulties attending school or is displaying aggression at school) and they are in need of an appointment as soon as possible. I typically recommend getting on several waitlists because these waitlists are often a year out.
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What to expect for the psychological evaluation
An evaluation for autism often consists of three appointments. The first appointment is typically about an hour long, where you discuss symptomology. In short, you discuss why you are here in the first place. You’ll review your observations with the provider, such as developmental delays, difficulties with social interaction, difficulties with transitions, etc.
The second appointment is the longest appointment. This appointment is often around three hours, so plan on taking time off from work or taking your child out of school for the day. There will be a series of tests which often include the ADOS, a test specifically designed to diagnose autism, an IQ test, amongst many others. As a parent you may be asked to fill out questionnaires and provide information from teachers and other professionals your child has worked with. The point of this appointment is to gather as much information as they can from the most sources.
The third appointment is where you get the results and discuss any recommendations with the provider—this appointment often gives parents the most anxiety (“Is my kid autistic or not?!”). It isn’t a blood test or a brain scan that can prove definitively that your child is autistic. Instead, clinicians make their best judgments. Unfortunately, this can sometimes mean they make mistakes. Keep in mind that if your child is female, they are more likely to be misdiagnosed or not receive an autism diagnosis when they have all the signs. That is one of the reasons why it is important to come to the appointment with as much information as possible and to be on multiple waitlists. You may want to receive a second opinion if you’re questioning the results.
Finding the Right Support
Once your child receives a diagnosis, you might feel some relief that you have some answers, but now you might also have a sense of panic because you do not know what to do next.
First, take a deep breath. There are a ton of options out there and many resources for you as a parent and for your child. Start by thinking about your child’s needs and those of your family. This may mean informing your child’s school so they can be placed on an IEP or 504 plan. This might mean looking at a different school environment all together. Your job as a parent is to advocate for your child’s specific needs, and every child’s needs are going to be different. Autism is a spectrum, and as cliché as it sounds, the spectrum is broad.
Therapeutic Support for Autism
You might determine that your child or your family would benefit from mental health therapy to process this diagnosis and learn new strategies. Unfortunately, when we look at the history of autism treatment, there is a long, significant history of trauma and abuse. A good resource to find such a provider is ndtherapists.com, which is a directory of neurodivergent-identified providers who all use affirming approaches. Of course, it should be noted that a therapist does not have to be neurodivergent themselves to be affirming.
At one time Applied Behavioral Analysis (ABA) (a type of therapy) was considered the gold standard for autism treatment, but it is now considered problematic within the autism community. It has been harshly described as “dog training” for kids. Children were abused and mistreated, however people continue to use ABA. I always encourage my clients to do their research on therapy modalities to know which ones to avoid and what questions to ask your provider.
Additionally, you may consider other kinds of services. Many autistic folks benefit from Occupational and Speech Therapy. I have many clients who struggle with eating or with an ARFID diagnosis, and it can be helpful to meet with a dietitian who specializes in neurodivergence or look at Feeding Therapy.
Many families of autistic kids receive case management. In this case, you will use the evaluation results you have received and request a case manager through your county. They will complete an assessment and meet with your family to discuss supports you may need. This can involve potentially finding group home services, ILS services, you name it. Case managers are wonderful at assessing your needs and reviewing the different services available.
Check out our blog post about ways to support a loved one with autism
Advocating for your child’s needs
I won’t lie to you. It can be a long road ahead. What gives me hope is working with passionate parents such as you, who advocate for their children’s mental health, are doing their research, and creating a supportive environment at home and in therapy. Early intervention helps because knowledge is power. Like with any new diagnosis, support is helpful in improving functioning and overall wellbeing.
Ready to take the next step? Click the link below and get matched with the perfect therapist for your child’s needs.
It gives me hope to see children grow and thrive through therapy and family support. I love seeing them advocate for themselves and ask for what they need. I’ve had clients I work with tell their teachers: “I am autistic. I need to doodle in class to help me concentrate and not become overstimulated.” I love watching children learn the tools they need to advocate for themselves and be successful.
It also gives me so much hope that things have changed dramatically from when I was a kid. When I was a kid, no one had fidgets. No one was really “coming out” and sharing that they were autistic, much less therapists and other providers. We have built so much awareness and acceptance that it truly makes me hopeful, and that is in large part because of this generation of children. Gen-Z is fierce and are capable of shaking things up.
