Advice for Those Facing a Late Autism Spectrum Diagnosis

By Sam Farmer

Better late than never! That is the best outlook one can possibly have upon learning of an autism spectrum diagnosis long after the fact. This wisdom comes from experience.

At first, I felt blindsided, frustrated, confused and let down that it took as long as it did (40 years), considering that I had already worked with a good number of clinicians who never thought to have me investigate the possibility of autism. These emotions were thankfully short-lived and eventually led to a feeling of enlightenment, of greater self-knowledge, and to clarity.

If you are facing a late autism spectrum diagnosis, you may also want to consider the following:

Take a deep breath, relax and tell yourself that this is NOT the end of the world. 

In fact, you might find, in time, that the diagnosis is a good thing, as I did. This may seem counterintuitive, but it is a realistic sentiment if you are able to look at your new reality with an optimistic attitude. Think of the diagnosis as being a missing puzzle piece that has finally been found, and now you have a better sense of who you are than you did beforehand.

This is not a disorder, a disability or a “condition”, regardless of what you may read or hear from others. 

Rather, you have an autism spectrum “profile”. Words matter. The three initially mentioned words tend to suggest to spectrum folks that there is something wrong with them. The emotive power of these words can get under the skin, sink in, and compromise self-esteem. Do not let them do so.

There is nothing wrong with you. Your brain is wired differently, that’s all. True, you are facing some unique challenges, but everybody faces challenges and adversity of various types. That’s what makes us human!

You are still the same person you always have been. 

No diagnosis can change who you are. Rather, your diagnosis has always been at the core of who you are. You are simply finding out about it now.

Learn to accept, or better yet, embrace, the diagnosis.

Doing so will help preserve self-esteem, or it will facilitate the process of building self-esteem if you are working on this. You deserve to be happy regardless of what you have been diagnosed with. If you let the diagnosis tank your sense of self, true happiness will end up out of reach. You only live once. Accept the diagnosis. Accept who you are.  

Reveal the diagnosis to others on your terms, in your own way, and in your own good time. 

There is no right or wrong way to go about this. It all comes down to your comfort zone with respect to whom to tell, when to tell them and how you wish to break the news. You may choose to tell nobody, although your closest, most trusted loved ones should probably know. Bear in mind the following:

• Anybody with whom you were or are in an abusive relationship probably should not be informed of the diagnosis. Hopefully this is not the case, but if it is, your autism spectrum profile might end up being weaponized against you if they find out about it.
• Consider how you think the people you choose to tell might react before you actually tell them, and prepare yourself accordingly. You may need to explain yourself to some of these folks before they are ready to accept your new reality, particularly those who know little or nothing about autism or who have a negative opinion about it.
• Think hard before revealing the diagnosis at your workplace or at other venues where the stakes may be high when disclosing this kind of information. Who, if anybody, at work, can be trusted with this information such that if they know, it will not adversely affect how you are treated?

Take the time to look back on your life from your newfound perspective and re-evaluate. 

Use the benefit of hindsight to try to come to an understanding of why things turned out the way they did. Try to answer lingering questions for which there were never satisfactory answers, perhaps until now. Rediscover yourself! For example, I was finally given an explanation for why socializing in group situations was always a struggle; why for years at the workplace I tended to work in a vacuum when I should have been more of a team player; why dating and relationships were always sore subjects; why I feared confrontational situations and getting yelled at, and why I would frequently become completely disconnected from my surroundings for no good reason. You may find, as I did, that looking back in this fashion can lead to your moving your life forward.

Identify those aspects of your autism spectrum profile that you feel should be addressed. This is a logical next step after looking back and reevaluating your life (see directly above) in that now, you actually begin the process of charting a way forward. Common challenges that spectrum folks tend to want to improve upon include self-esteem, self-awareness, awareness of others, self-care, and many others. Figure out the best way forward for you.

Get help. 

This is the logical next step after identifying which challenges you would like to address (assuming that there are challenges you feel need to be addressed). Doing so is not a sign of weakness. Rather, it’s the smart thing to do in that the likelihood of better outcomes is higher when you have the proper help than if you go it alone. Revealing your vulnerabilities so that they can be addressed is an act of strength and of courage, the courage to make a change, to move forward. Resources are available online, including coaching videos, blogs, articles and support groups. Clinicians who have experience working with folks on the spectrum are worth considering, including but not limited to neurologists, speech language pathologists, social workers, psychologists, psychiatrists and occupational therapists. If an appropriate clinician cannot be found in your neck of the woods, there are some who will work remotely with you via video conference (Skype, etc.) or over the phone. Autism resource centers (ARC’s) and organizations that are devoted to helping people on the autism spectrum are ready to provide assistance as well.

Sam Farmer wears many hats, among them father, husband, musician, computer consultant and autism spectrum community contributor. Diagnosed later in life with Asperger’s syndrome, he writes blogs, records coaching videos and presents at conferences and support groups for the Asperger/Autism Network. To learn more, visit samfarmerauthor.com.

A Long Walk Down a Winding Road: Small Steps, Challenges, & Triumphs Through an Autistic Lens is available on Amazon.