4 Tips to Get an Accurate Autism Evaluation as an Adult
Tip #1: Keep a journal
Organize your journal according to the following themes to help yourself see patterns and trigger memories that might be important:
Special interests, obsessions and routines (include topics of interest, frequency and depth of interest. Also include if interests are serial or ongoing. Make note of how you feel or what happens if you are not able to follow through on a routine. For example, What happens if you aren't allowed to pick your fingernails, straighten your books or finish your sentence?)
Sensory processing challenges (include any sights, sounds, smells, tastes, touch that are uncomfortable or painful. Also include any sensory seeking behaviors such as stimming and playing sports or exercising to extreme degrees).
Relationship difficulties (include romantic, friendships, family, co-workers, bosses and teachers. Make note of any examples of being taken advantage of, difficulty maintaining relationships, misunderstandings, extreme sense of loss or not feeling a sense of loss when a relationship ends due to a move, death, breakup or other life transition).
Communication style and problems (make note of any feedback you have received from others and include those comments. Also include if you need extra time to process or if you get into conflicts with other people because of misunderstandings. If you don't understand humor or abstract ideas, give examples of this. Do you know how to ask for help, be diplomatic and hold back and forth conversations? Or do people complain you never listen to them? Are there some situation where you feel comfortable communicating and other areas where you struggle. Specify those).
Understanding and coping with emotions (include any responses to life events that seem unusual compared to other people such as more intense or less intense emotions, a delay in emotions, difficulty reading other people's emotions or identifying your own).
Anxiety and unusual fears (include any unusual childhood fears or things that cause you anxiety today that other people would not have a problem with like fear of stuffed animals, mirrors, silly putty or making phone calls. List any current or previous diagnosis of anxiety disorders as well).
Executive function issues (include problems with memory, getting stuck on thoughts, black and white and concrete thinking, difficulty prioritizing or any other organizational or executive function issues. Specific examples can include difficulties: making deadlines for work or school, keeping the house clean, getting sidetracked when completing tasks, obsessing about past events or future activities).
If you feel overwhelmed knowing where to start, begin by writing down what led you to think you should be evaluated in the first place. Document any characteristic along with specific examples as you think of them. Include examples throughout your life. Things like- always standing at the edge of the playground, difficulty with eye contact, getting upset with changes in routine- (i.e. an unexpected phone call or visitor), not wanting different types of food on the plate to mingle with each other, people telling you that you are insensitive or rude are all noteworthy.
Any time you can quantify something- do it. If you like to look through every single page of the Rio Grande jewelry catalogue (all 900) and stim on the shapes like I do, then specify that. If you spend 2 hours a day making lists of your favorite sports teams, actors or movies, make sure you document the amount of time you spend making lists.
How you respond to events is also important. When your mashed potatoes mixed with the green beans did you refuse to eat your meal or cry for 15 minutes? Any behaviors you or others recall should be noted.
Any consequences need to be documented as well. Do you have trouble staying in a job because you can’t get along with your boss or co-workers, or you get fired because you can’t meet expectations even though you try and want to do good work? Do you get burnt out? Are you unable to attend social functions or manage household responsibilities because you have phone anxiety? Evaluators need to be made aware of any problems that you encounter in your life.
Take your time. This is not a project you can do in an hour. I took 3 months to complete my journal.
Don't worry about perfecting your categories. If you spent lunch hiding out in a classroom there could be more than one reason: sensory overwhelm, anxiety and/or difficulty with relationships. Pick a category and just make note if you have more than one reason for a particular behavior or observation. You might also have experiences that you aren't sure fit into a category. Go ahead and document them too. A good evaluator will know if this information is relevant and what to do with it. Your job is to make sure that you give the evaluation team as complete a picture of your life challenges as possible.
Tip # 2: Look at videos and pictures of your childhood
Seeing pictures or videos of yourself can trigger memories of specific events and remind you of long forgotten but important details which may be important for your evaluation. For example- I saw a picture of myself sitting in the grass at age 13 after a spinning episode. The picture reminded me that even as a teenager I spent a lot of time spinning. The picture also triggered memories of grade school recess when I would stay on the merry-go-round long after everyone else had grown tired or gotten sick. The picture also got me thinking about my other favorite pastimes which included reading the encyclopedia and the dictionary. Another picture of me at age 19 reminded me that the photographer complained that my smile looked "forced and rigid". He had to teach me how to smile "naturally" for the photo shoot.
Tip #3: Ask family members and friends for feedback
Ask family members, friends or others who knew you as a child or teenager for specific impressions and memories of you. They may remember events or incidents that you don't. My mother told me that I was a very fussy baby and could not stand any dirt on my hands. She also remembered that I would not turn towards her when she called my name and I did not show the usual signs of separation anxiety when she would leave me alone.
Others may also have different interpretations of events. A high school classmate gave me some very helpful insights based on how he perceived me. I had no idea that the only time he knew how I felt was when I was mad because that was the only emotion I effectively communicated to him.
Tip #4: Choose your evaluator wisely
Choose an evaluator that keeps up with the latest research and has experience evaluating adults. If you are a female, make sure they understand how women on the spectrum can look and behave differently than autistic males. Chances are you will share some of your darkest secrets with your evaluator so make sure you trust and feel comfortable with them. They should be willing to gather background information and spend more than an hour with you if necessary.
Do not settle for an evaluator just because they are available. You are better off waiting until you find someone who is a good fit and will take the time to give you a thorough evaluation. Many adults report going through an evaluation with someone they didn't feel comfortable with and feeling traumatized or invalidated as a result.
The more detailed information you can provide to an evaluator, the more thorough your evaluation can be.