What happens when children with Asperger’s grow up?
Valerie Gaus, a clinical psychologist in private practice on Long Island, has worked with adolescents and adults with autism for more than 15 years. Her new book, Living Well on the Spectrum, offers practical advice on coping with the high-functioning form of autism known as Asperger syndrome; affected people typically show passionate intellectual obsessions, oversensitivity to sensory experiences like bright lights and loud noises, and poor social skills.
How many people with Asperger’s have you treated?
I’ve worked with maybe 300 to 400 people on the spectrum in one way or another — not all in therapy, but I’ve had clinical contact with that many.
What draws you to working with these clients?
I don’t have anyone in my family who is diagnosed on the autism spectrum, but my father and brothers are engineers and they have that kind of quirky personality. I think I just had a natural affinity for conversations with people who talk like engineers. (More on TIME.com: Detecting Autism Early with a Five-Minute Questionnaire)
What problems do your clients typically face?
It runs the gamut, depending on age and whether or not they were diagnosed in childhood. There are probably two main cohorts of people that see. There’s a cohort of people who are in their mid-30s or older who come to discover they have Asperger’s at this point in their lives. Either they figure it out themselves because they read something, or are referred because a mental health professional suspects it.
Those people are usually coming to me, in the very best situation, to confirm the diagnosis and help put their past life in perspective through a new pair of glasses. Sometimes all the person needs is to frame things differently, in terms of the struggles they might have had. That’s helpful for some and sometimes they have just one or two sessions.
The worst case scenario is someone who has struggled with other mental health issues on top of their disorder, maybe chronic mood or anxiety disorders or personality disorders. When someone has [an additional] condition, then there are more complications.
I also see a younger cohort, very young adolescents and older teens — that’s the other half of my caseload. I see a lot of people between 18 and 22 because at that point in life when a person is trying to be launched into the world, the stress and transitions involved from the structured life of high school to college [are extremely difficult]. So many folks on the spectrum crash and burn [at this time]. I have a lot come in with major depressive disorder or a real worsening of anxiety disorders, and their parents are at their wits’ end because the child has flunked out of college three times.
Do you ever see people who try to self-medicate with alcohol or other drugs?
I see that a lot. Most commonly, I’ve seen alcohol, but I’ve also seen marijuana. There isn’t enough attention to it. When I have someone actively using, if I can’t work to reduce [it] through [therapeutic techniques], if that doesn’t work, the prognosis is not good. (More on TIME.com: New Version of an Old Drug Could Treat Autism And Addiction)
Many people say that people with Asperger’s have no empathy, but that doesn’t seem accurate.
It’s really not an accurate statement. People on the spectrum are capable of empathy and what gets in the way of people seeing that is the way that emotion is expressed. It’s so different from that of a typical person. There has been research done on it. They broke it down into cognitive and emotional empathy. [Cognitive empathy is understanding another person’s perspective; emotional empathy is feeling their emotions.]
On tests of cognitive empathy, people on the spectrum score lower, but on emotional empathy, they actually score higher than typical folks. The obstacle is that if cognitive understanding of what’s going on is [impaired, they may not be able to react appropriately].
People also tend to focus on the disabilities associated with being on the spectrum, rather than the talents and strengths.
When the symptoms of autism are causing great distress for a person or his or her family and there doesn’t seem to be any way to relieve that distress, that’s not a gift. My son shrieks all night — no one thinks that’s a gift.
However, if you can relieve the distress, you don’t have to change who the person is. The core, basic way that that person thinks and looks at the world, that can be a gift and should be preserved. Look at Temple Grandin. She went from being that shrieking child who didn’t speak to becoming an adult who can write about what things look like to her. Her brain is indeed a gift and it has brought her unbelievable success. She was able to help alleviate her disability without changing who she was. (More on Time.com: Photos: The Perspectives of Temple Grandin)
So what are some things people on the spectrum can do to cope better?
I think the first step is to become very aware of what the sensory issues are. Some parents aren’t aware. They don’t realize [that the teen is] seeing fluorescent lights in a different way than other people are. Some of the high-functioning people might always have a nagging sense of discomfort at work but not know where it’s coming from. You switch to incandescent bulbs and they say, “Wow, that’s better.” Sometimes they don’t even realize [which sensory issues are affecting or bothering them].
[Then], see if you can make environmental modifications to accommodate them. If you can’t, [don’t spend time in] that environment, if you can find another one.
A couple of people on the spectrum write about having a sensory toolkit. Zosia Zaks has written and lectured a lot about this. She has a lot of sensory issues. She says to always make sure you have on hand the things you might need. If she goes grocery shopping, she wears a hat with a brim and sunglasses because the light makes her uncomfortable.
Is having the label or diagnosis helpful for kids, or does the harm of stigma outweigh the benefits of diagnosis?
I’ve always thought it was an advantage to know, but on the other hand, it can be advantageous not to know: when I meet my 35-plus folks, those people have been amazingly resourceful and creative in coming up with [their own solutions]. Sometimes, they’re stronger than younger folks who knew all along.
[It also] depends on how the information is presented. It’s a disadvantage if no one talks to you about it. A 21-year-old may know the diagnosis, but no one told them what it [means]. Those people might be harmed. They can develop their own notions about [Asperger’s] that are so much worse than what it is. I’m in favor of sharing the diagnosis with kids. But when you do, you to have to give children appropriate and accurate information.
I start off with basic psychoeducation, [so people understand what the diagnosis means]. Sometimes, that does the trick. Other times, there may be some reason either in that person or their family to want to hang on to [negative] beliefs. There’s some pathological thing going on where the person benefits from believing [they can’t do much] because it allows them to avoid something they’re afraid of. If I believe I can’t do anything, I don’t have to do anything. (More on TIME.com: A Genetic Link Between Autism and Anorexia)
What do you do to deal with the rigidity about routines and sameness that people on the spectrum often display?
It all depends on what kinds of things it is interfering with. If there is some rigid habit that is not interfering with anything or hurting the person, it might be self-soothing, so keep it. You only have to change if it’s causing negative consequences for you or someone in your life.
When you do go about changing, usually rigid behavior or rituals serve some kind of function that is important. If you try to reduce it, you have to find an alternative way to get that comfort. It’s a matter of “know thyself.” Why you’re doing something, what are you getting out of it? Don’t assume that it’s bad. You just need to find another way to get [comfort, or whatever the ritual is providing].
What can people who aren’t on the spectrum do to help?
First of all, they have to accept that a person on the spectrum thinks differently than they do. Just like people with Asperger’s have to accept that [other people’s] thinking is different. You can’t try to change them. Then, the next step is to try to learn about how that person thinks.
What kinds of social problems do you see most frequently?
[I worked with a doctor who faced one of the most common problems. She was seen as curt and cold.] She hated making small talk. It was not something she knew how to do, or wanted to do. She worked on this and realized for the first time in her life that small talk does serve a function. Once she could accept in her scientific brain that it served a function, she was willing to try to do it.
At first, she tried to do the technique of learning about others. But she thought you had to be their best friend [and that wasn’t what she wanted]. When she learned that you didn’t, then she was willing to try it. She started to learn about her coworkers; the receptionist was a dog-breeder on the side so that was something to talk to her about.
She also needed alone time at lunch. After a morning of seeing patients, she was tapped out socially and needed time alone, so she learned to take a 15-min. walk before going into the lunchroom.
How do you help patients with dating and romantic relationships?
Often when a person comes in about dating problems, they’ve been persistently doing the same thing over and over despite the fact that it doesn’t work. They belong to a dating sevice like Match.com or eHarmony and keep paying fees when it’s not working.
What I encourage clients to do is give up the idea that you must date, and instead pursue some of your interests more vigorously in a way that you will meet others with the same interests. Join a hiking club, for example. Hike because you like hiking. When you’re there, you’re in a better mood, more relaxed and more yourself, so that if you happen to meet someone there, you’ll be at your best. And if you don’t, you haven’t lost anything. It’s win-win.