Receiving an autism diagnosis as an adult can be a life-changing experience that brings a mix of emotions and challenges.
For many, it may provide a sense of relief and validation, finally offering an explanation for the struggles and differences they have experienced throughout their lives.
However, the journey of self-discovery and navigating life as a newly diagnosed autistic adult can also be overwhelming and confusing.
This article will discuss what happens during the diagnostic process and the stages that come after an autism diagnosis as an adult.
By understanding these aspects, if you suspect you may be autistic or have recently been diagnosed, you can better prepare yourself for the path ahead, seek appropriate support, and ultimately embrace your unique identity as an autistic individual.
The diagnostic process
To receive an autism diagnosis as an adult, you will need to undergo a comprehensive assessment by a team of experienced professionals, which may include physicians, psychologists, and speech-language pathologists.
The process begins with a thorough review of your developmental, medical, and family history. You may be asked about your experiences, challenges, and strengths in various areas of life, such as social interactions, communication, and behavior patterns.
The assessment will likely involve structured observations and interviews to evaluate your social communication, interaction, and behavioral characteristics.
Standardized tools, such as the Autism Diagnostic Observation Schedule (ADOS) and the Autism Diagnostic Interview-Revised (ADI-R), may be used to gather information and determine if you meet the criteria for autism outlined in the DSM-5.
It is important to note that autism can present differently in adults compared to children, and many adults, especially females, may have learned to mask or camouflage their autistic traits.
The Camouflaging Autistic Traits Questionnaire (CAT-Q) may be used to identify individuals who have developed coping strategies that make it more challenging to recognize their autism.
Throughout the assessment, the team will consider differential diagnoses and rule out other possible explanations for your symptoms. They will then integrate the information gathered to determine whether you meet the diagnostic criteria for autism.
After the assessment, you will receive feedback on the findings, recommendations for support and interventions, and information on any co-occurring conditions that may require additional evaluation or treatment.
Stages of a newly diagnosed autistic adult
Below are some of the stages you may go through as a newly diagnosed autistic adult.
As someone who was diagnosed as an adult, I also want to share my experience of how I am navigating each stage.
These are not clear-cut stages, and you may find that you cycle through them all at different points in your life, feel stuck at one stage for a while, or experience multiple stages at once.
Everyone’s experience with autism is different, so it is completely normal to have differing ways of managing a new diagnosis.
Stage 1: Processing time
The first stage for many adults newly diagnosed as autistic is that we may need to take some time to process the diagnosis.
Autistic individuals are often believed to have a slower processing speed compared to non-autistic individuals, so it makes sense to allow yourself as much time as you need to after something as potentially life-altering as an autism diagnosis.
When you are first diagnosed, do not put pressure on yourself to try to do something straight away. This can include disclosing your diagnosis to others, trying to find extra support, or making big life decisions like switching up your career.
“I would recommend that you wait a little while, sit on it, get comfortable with it yourself, which could take a long time, and only share it with people who you trust and who create space for you to be yourself.”
Mom on the Spectrum
This is the time to take care of yourself. Do things that you enjoy such as a hobby, self-care activities, and self-reflection on your own or with a trusted person.
I am very privileged to have my husband, who I feel comfortable enough around to think aloud to, but I also appreciate having a lot of time to myself to process things.
If you have someone in your life who is understanding and supportive, then it may be helpful to ask them if they would be ok with helping you ‘unpack’ your diagnosis. You may not even need them to say anything or offer any feedback, simply speaking aloud to someone can help with processing.
It might also be helpful to take up journaling as a way to write down any thoughts or emotions that come to mind.
You could try starting the journal entry with: “I am autistic” to get you used to seeing how this label suits you. Then, write down anything that comes to mind without judgment or worrying about making sense, as this is only for you to see.
This also does not have to be restricted by words. If you find that drawing, coloring, or even playing an instrument is a good method of processing, then allow yourself to do this.
Stage 2: Mixed emotions
It is completely normal to feel a rush of various emotions after you have had time to process your diagnosis.
I felt a great sense of relief to start with and was happy that I now had an answer to all the questions I had about myself. This was mixed with some feelings of frustration that no one (including myself) had picked up on my autistic traits sooner. I also feel a lot of annoyance at myself for feeling the need to mask my traits and not live authentically.
You might find that you cycle through different emotions day by day or even hour by hour. You might feel ecstatic and inspired one day, followed by a day of confusion and anxiety the next.
Autistic individuals are thought to have strong emotional responses and dysregulated emotions, so this mixture of feelings after a diagnosis is expected.
It might be helpful to use an emotions wheel to help you identify what you are feeling. Give yourself permission to experience and acknowledge your emotions without judgment. Recognize that it’s normal to have a range of feelings, and avoid suppressing or dismissing them.
I have found it useful to manage strong emotions by putting that energy into exercising. To redirect my focus, I try to set myself a workout goal or try out a new physical activity. The idea is not to distract from experiencing my emotions, but it can help me feel more relaxed.
You could try to set yourself a goal of doing a pull-up, swimming 50 lengths, running 5 kilometers, or learning a new dance routine, for example.
If physical activity is not for you, then perhaps try one of the following:
- Write poems or short stories to express your feelings
- Get a canvas and paints and create a piece of art without putting much thought into it – just paint what you feel
- Listen to music that resonates with your emotions – try to find a specific playlist or create your own that is curated to your specific mood
- Try a crafting activity such as knitting or woodworking. The repetitive hand movements can help you feel grounded
- Experiment with new recipes or cook your favorite comfort foods. The process of preparing meals can be therapeutic and help you focus on the present moment
Stage 3: Imposter syndrome
Sometime after my diagnosis, I had some imposter syndrome feelings, meaning that I felt that I was not really autistic, and I had fooled the autism assessor into thinking I was autistic when I was not.
After my assessment, I found myself overthinking how I had responded to questions and behaved during the process. I questioned whether I had subconsciously changed my behavior or answered in a way that would make me seem “more autistic” than I really was.
It appears to be a common experience for individuals diagnosed in adulthood to compare themselves to those who were diagnosed as children. You may feel that they are not “autistic enough” because you managed to go through life undiagnosed until this point, falling under the radar and not being noticed as autistic by others.
Imposter syndrome feelings can still come and go for me. One thing I have found helpful is to continue to listen to other autistic people’s experiences, especially those who have been diagnosed as an adult. It’s amazing how much I can relate to their experiences, and it leaves me with little doubt that my diagnosis was accurate.
Try to read some books by autistic adults, watch videos about people describing their experiences, or connect with autistic communities online or through support groups.
Remind yourself that autism is a spectrum, and every autistic person has a unique set of strengths and challenges. You don’t need to fit a specific mold to be “autistic enough.”
Your experiences and feelings are valid, and it is common to feel like an imposter after an autism diagnosis, so you are not alone. Remember, an autism diagnosis later in life does not make you any less autistic.
Stage 4: Acceptance
After receiving an autism diagnosis, you may go through a stage of acceptance as you come to terms with your newfound identity.
“Now, the new label of autistic can help to dispel some of the older labels like lazy or awkward or weird or creepy. Now I can more clearly say, ‘No, I wasn’t lazy. I’m autistic, and I was doing my best.'”
Autism from the inside
You may have criticized yourself in the past for not being able to navigate social situations as well as others, but you can now recognize that autism played a part in this. It can be helpful to review past ‘mistakes’ with an autistic explanation.
I will often reflect back on my life and feel frustrated that I suppressed my authentic self for so long, and I still find myself in situations where I hide my autistic traits to ‘fit in’ better. Instead of beating myself up and dwelling on this, it is helpful to accept that this will happen from time to time, and it can take a long time to undo years of learned behavior.
Consider what can be learned from ‘mistakes’ and view them as opportunities for growth and self-discovery.
It is also useful to accept that you cannot always set neurotypical standards for yourself. Many societal norms and expectations are based on neurotypical standards, which may not be relevant or attainable for you, and that’s ok.
Your needs, processing styles, and ways of interacting with the world may be different so try to set yourself goals and timelines that best suit your unique traits, strengths, and struggles.
“I’ve started to reevaluate my life and my environment… I don’t think autism is what my struggle is. I think my struggle is that I’m not accepting myself and I’m not creating good support systems for myself… I’m not choosing things that make me feel good. I am choosing things that make other people feel good.”
Neurodiversity Foundation
A neurotypical expectation might be that to maintain friendships, you should regularly attend social gatherings, engage in small talk, and participate in group activities. However, as an autistic individual, you may find large group settings overwhelming, small talk draining, and certain activities overstimulating.
Instead of holding yourself to these neurotypical standards and feeling discouraged when you struggle to meet them, you can set friendship goals that align with your needs and preferences.
For example:
- Rather than attending large group gatherings, you might focus on nurturing a few close friendships through one-on-one interactions in quieter settings, such as meeting for coffee or enjoying a shared interest together.
- Instead of forcing yourself to engage in small talk, you can work on building connections through deep, meaningful conversations about topics that genuinely interest you and your friends.
- If you find certain social activities overstimulating, you can suggest alternative activities that you enjoy and that accommodate your sensory needs, such as watching a movie together, playing a board game, or going for a walk in nature.
- You might also set realistic expectations for the frequency of social interactions, recognizing that you may need more alone time to recharge than some neurotypical individuals. This could mean setting a goal to connect with a close friend once every few weeks, rather than feeling pressured to attend weekly social events.
It is important to surround yourself with the right people. Supportive people should also accept that you have different social needs. But if they are not accepting, you may need to question whether they are the right people for you.
Stage 5: Embracing Autism
In the embracing autism stage, you may begin to shift your focus towards the unique strengths and benefits that come with being autistic. You may start to view autism as an integral part of your identity rather than a hindrance or something to be ashamed of.
You may recognize the positive traits and skills that stem from an autistic way of thinking – shifting from a deficit focus to a strengths focus.
Alex from the Neurodiversity Foundation explains her autistic strength in the workplace:
“The fact that I am so literal makes me really good at giving instructions… They’ve (my co-workers) told me they have never gotten better instructions from someone in their lives because I am so clear and concise and specific with what I am expecting.”
Neurodiversity Foundation
Embracing autism is an ongoing process of self-discovery and learning to live authentically. This may involve exploring your special interests and finding like-minded individuals within the autism community.
For example, if you have a special interest in history, you can most likely find online forums and communities for the specific historical period that you are interested in, have deep discussions, and connect with other individuals, many of whom may be neurodiverse like you.
As you become more comfortable with your autistic identity, you may choose to disclose your diagnosis to others (although you are not obliged to share this with anyone at all if you so choose) and become advocates for the autistic community.
You can educate others about neurodiversity, challenge unhelpful stereotypes, and fight for accommodations and acceptance in various settings such as schools or workplaces. Having more autistic voices involved in making decisions for other autistic people is important and valuable.
Finally, consider what has been gained from your autistic diagnosis:
- Validation of your struggles and challenges, recognizing they stem from a neurological difference rather than personal failings
- Improved self-advocacy skills, learning to communicate your needs, assert boundaries, and seek accommodations that enhance your well-being and success
- Opportunities for self-discovery, exploring your strengths, interests, and unique abilities through an autistic framework
- A deeper appreciation for neurodiversity and the unique perspectives and contributions of autistic individuals in all areas of society
References
Haigh, S. M., Walsh, J. A., Mazefsky, C. A., Minshew, N. J., & Eack, S. M. (2018). Processing speed is impaired in adults with autism spectrum disorder, and relates to social communication abilities. Journal of autism and developmental disorders, 48, 2653-2662. https://doi.org/10.1007/s10803-018-3515-z
Harmens, M., Sedgewick, F., & Hobson, H. (2022). The quest for acceptance: A blog-based study of autistic women’s experiences and well-being during autism identification and diagnosis. Autism in Adulthood, 4(1), 42-51. https://doi.org/10.1089/aut.2021.0016
Mazefsky, C. A., Herrington, J., Siegel, M., Scarpa, A., Maddox, B. B., Scahill, L., & White, S. W. (2013). The role of emotion regulation in autism spectrum disorder. Journal of the American Academy of Child & Adolescent Psychiatry, 52(7), 679-688. https://doi.org/10.1016/j.jaac.2013.05.006
