Temple Grandin has been at the forefront of autism awareness for the past 50 years. She has seen autism unfold from an unknown to a much better recognized diagnosis, yet she is keenly aware that gaps in understanding and unfulfilled priorities remain. This issue of Autism Spectrum News is themed “Supporting Older Adults,” and so, appropriately Temple shares her unique perspectives as an autistic woman, now in her 70s.
What has surprised you the most over the years regarding autism awareness and scientific research?
Awareness has improved, but I’m concerned about the many young people who come up to me and say that all they want to do is to become autism activists. For me, career is my primary identity and autism is a secondary identity. I wouldn’t want to change, I like the way I think but my primary identity is career. Where people make autism their primary identity, I’m concerned. If I had diabetes, I wouldn’t make that my primary identity. It’s good to be aware, but I’m seeing too many smart kids become too focused on the label.
A recent scientific article surprised me: Genomic Trade-Offs: Are Autism and Schizophrenia the Steep Price of the Human Brain? This article basically says the same genes that make our brains big also are involved in autism and schizophrenia. With autism, you get extra growth in the back of the brain, which might account for art, math or music skills, but that then short-changes the social circuits. That paper was a mind-blower to me. Some other interesting studies that have surprised me scientifically, Solitary Mammals Provide an Animal Model for Autism Spectrum Disorders. When you look at animals, some are more social than others. For example, in the big cats, lions are more social than panthers. One of the things I talk a lot about to the public is that autism in its mild forms may be just part of biological variation. Look at Silicon Valley, it is run by people on the mild end of the autism spectrum running fortune 500 companies!
You wouldn’t have achieved the level of success in your career without the motivation your mother gave you, pushing you to try new things and discover the world. How did that shape you into the person you are today?
As a young child, my mother stretched and motivated me and gave me choices; there was always a choice. For example, I was afraid to go to my Aunt’s ranch. Well, if I hadn’t gone to my Aunt’s ranch, I wouldn’t have been in the cattle industry. My mother gave me a choice: you can stay for a week or you can stay all summer – not going was not one of the choices.
What is your view of sensory problems in Autism?
Sensory problems and anxiety are two things that really cripple some of these individuals. For research, I think a priority should be focusing on sensory issues. I often refer to a scientific paper titled Environmental Enrichment as an Effective Treatment for Autism. Sensorimotor Enrichment is an adjunct to other therapies, not a replacement, where you stimulate two senses at the same time, with a lot of emphasis on smell and touch, and you get improvements for sensory issues. This can be done with simple, inexpensive household items like aromatherapy and carpet samples and warm and cold glasses, things like that. I want to work on practical ways to treat sensory problems. Like for example, if a kid is afraid of the vacuum cleaner (this is something I know works, even though it is not evidence-based), you give the kid the vacuum cleaner and let him play with it, where he controls it. Then, instead of being afraid, he now loves the vacuum cleaner. It is important for the kid to control the dreaded sound.
The problem with sensory issues is that they are so variable. In order to do a study, instead of assigning the subject to treatment by autism, you need to assign based on what their primary sensitivities are: Do they have visual sensitivities, touch sensitivities, sound sensitivities? Otherwise you just get a jumble of results that is like the average size dog. Let’s say we are going to talk about dogs fitting on airplanes. Yes, on the whole they do fit on airplanes, but how about the Great Dane? That is one example of a dog that is an outlier – that is a subgroup out there that does not do well on planes simply because of their size.
What is your advice to parents who ask you about medications for their child?
A lot of parents and counselors are telling me their kids are so anxious that they can’t do anything. Use antidepressants to treat the anxiety and if you get excitation, which is very common, you cut the dose and then it works fine. I have enough practical experience where probably 30 people have told me they cut the dose of the medication and then it worked fine.
Now, I’ve been on low doses of antidepressants for over 30 years – it saved me. What happens is that they put kids on a drug like Prozac and then they experience excitation as a side effect. Excitation keeps coming up in the literature that I’ve been reading. I’ll tell you what’s wrong – they are giving too high a dose. Forget the label, sometimes you need to go lower than the starter dose. I’ve seen this over and over again. Every time they do a research study, they just use a set dose. If it’s too high, it’s a mess when dealing with the anxiety. For years I have been preaching the use of a lower dose – if they experience excitation, lower the dose. I’ve seen that work over and over again.
Can you comment on early intervention?
In a lot of states, we have a real problem with parents getting early intervention services. In some states, a child doesn’t get into early intervention until age 4. In other states, they have early intervention, but when the kid turns 3, they are dropped from the earliest intervention program. All too often, they are waiting a year to get treatment, which is absolutely horrible.
How has your health changed as you moved into your older years? Have you had to make any changes?
I’ll be 72 this summer. Well, I don’t climb fences anymore, due to balance issues. I have quite a lot of chronic pain. I’m still taking the tricyclic antidepressant desipramine that I’ve been on since 1980 – I take 50 mgs, which is a starter dose, and I’ve never stopped taking it. I’ve heard too many horror stories about when people that were stable went off their meds, like a bipolar medication, and it was a complete mess.
In my early 30s when I started the antidepressants, it stopped the colitis I had. If you watch the movie, I was eating yogurt and Jell-O, and what the antidepressant did is it turned the volume control down on my fear responses and eased the panic attacks I was suffering from. It absolutely saved me, I don’t think I’d be here today without it – I would have lost all of my innards to colitis.
I developed Meniere’s disease and was losing my hearing about 15 years ago. I was able to get the Meniere’s disease into remission – that’s when I learned how to really surf the internet and read the scientific literature, so that I could educate myself. If I wasn’t a trained scientist, I’d be in a lot of trouble. When I had the Meniere’s disease, I had tinnitus which drove me nuts. I just had to find a solution to this and I knew the solution was going to be simple things. I learned this from reading patient message boards. What I did was play a wave machine and some classical music really softly, together at the same time. The tinnitus tuned out because the brain can’t listen to three things at once.
I see a commonality in your approaches to addressing problems with simple, low-tech methods.
That’s right, I do it because I want to offer alternatives for our low-income families. I have seen students where colored paper has saved college careers. I saw another student where pink sunglasses helped her to get an A on her Economics quiz because the print on the PowerPoint projector no longer looked like it was “jiggling.” In this case, I don’t care if it is evidence-based or not – you are talking about a $15 pair of sunglasses saving a student’s college education.
I met a woman at a conference who had a head injury and mentioned my book Temple Grandin’s Guide to Working with Farm Animals because it has pastel paper in it. She looked at the yellow paper and exclaimed, “I can read, I can read, thank you!” Something in her brain caused white paper to make it impossible to read, and a simple change to colored paper solved her problem. What I say is, if something is cheap, totally safe, takes a few minutes to try it, then yeah, we are going to go ahead and try it. But if something is expensive, possibly dangerous, and takes a long time to see if it’s going to work, then I rely on evidence-based proven-effective approaches.
Have the challenges and impact of autism changed for you as you have aged?
I believe that some people with autism get better with age. For myself, I found my thinking got better with age, because as I read more and more, I have a bigger database because I’m a bottom-up thinker. I believe my thinking got better as I got into my 40s, because then you have enough knowledge, and it also gets rid of a lot of the black and white thinking. So, my brain has done just fine with age.
I’m still traveling a lot and keeping myself really busy, because I’d be bored – I have to stay busy.
I do 100 sit-ups every night, which I despise, but the sudden burst of energy they provide helps me sleep.
With depression and mental health issues often co-occurring with autism, could you speak to these issues and their impact in older adults.
In talking with people at conferences, I have been seeing depressed people in their 50s and 60s because the company which they have been employed at all of their lives has shut down and they don’t know what to do next.
I would suggest all adults, regardless of their situation, start doing something new that is social.
For someone who is getting close to retirement, I would recommend that they start doing other things, so they have other things to do that they are already involved in by the time they retire. You need to replace the job with something else. In my generation, we had bowling leagues, golf – those are wonderful activities for socializing. Find others that have shared interests to participate with you.
For example, at the Kansas City airport, they’ve got stores and boutiques there and they have a huge model train exhibit. I bet you the person who’s built that is on the spectrum. I look at that and think, somebody’s having a good time, and he’s probably an older adult.
Some people play video games online, but I think it’s important that they get real people-to-people interaction in the activities they choose. Doing things with your church or other house of worship is another option – they can hand out programs and give out food.
Also, there’s been some real problems in some older adults who refuse to try medication. I’ve talked to people who are very anxious about going to their doctor. I’ve talked some into trying one of the SSRI drugs at a low dose and it has really helped improve their mental health situation.
There is broad sentiment to both fund and provide adult autism services. What do you consider to be the most critical needs and supportive services for older adults?
People need decent health care, that’s number one. There are many individuals who end up on social security disability insurance because they need the health care. I’ve talked to some who would be happy to give up their SSI check as long as they still had the Medicaid. Without good medical care, I wouldn’t be here today.
The other thing is transportation. Some people have health care, but they can’t get to the services they need due to a lack of transportation. This is also an issue on getting to social and recreational events.
Transportation is also crucial for jobs. I talked to a very innovative woman in Colorado that has put together great jobs for people on the spectrum. Transportation is her number one issue and they are at the point where they are going broke on Uber cars.
Housing is another issue, we’ve got so many homeless people on the spectrum on the street. In fact, right now I’ve been communicating by phone with a homeless man who’s autistic. He happens to have a very bad problem with saying inappropriate things to people – when he says them to me I just hang up on him. Well, I’m actually paying for him to stay at an inexpensive motel, so he’s stabilized. And he’s realizing that he needs to start changing what he is doing. I’m an academic, but I’m also a person out of the construction industry. In construction, you’ve got to get things done – you have to fix things. It’s a very active approach. How can I get this man off the street, what do I need to do with him where I get him quality services that don’t cost that much? We’re doing quality, we’re not putting him up in some slum full of rats, it has got to be quality.
Another issue is medication polypharmacy, where you are taking multiple medications to manage many different health problems. Often times a person is on ten different drugs and maybe they need to be on three. It’s a big problem for Medicaid patients. Every time they throw a fit, they just throw another drug at it. All too often, no thought goes into medication management. Why did you start this drug, why are you still on that drug, do you even know about the drug interactions?
What are your hopes for future generations of autistic individuals?
I want to see kids get out there and be everything they can be. I don’t want the person that should be doing the high-end skilled trade they he loves, such as plumbing, electrical, heating, mechanics, and instead, they are in the basement playing video games, I don’t want that. These kids are not going into the video game industry, that’s just not happening.
If you have a child who is more moderate, some could live in a group home – he could do a simple job. In other words, the attitude is to figure out what they CAN do.
Some of the more severely challenged individuals with autism often have other heavy-duty medical problems on top of autism like epilepsy you can’t control, or some other problem. But it’s still about figuring out what they CAN do, with less handicap mentality.
Where the parents really get stressed out is when you have an individual whose situation doesn’t allow them to do typical activities like shopping, going to restaurants, going to the movies – they can’t do with their child. By the time I was five, we were able to do normal activities like that.
What do you say to parents in that type of situation?
It’s a very difficult situation. Those parents really need some respite, they need some help. I’m thinking of a case in Texas where every month a church put on this big respite function to give parents a short break from child care. One family had a very severe child with autism who also had many other major medical issues. They brought their child to this church respite function and the parents just went out in their air-conditioned car, laid the seat back, and played the stereo for four hours. They were completely fried because they couldn’t get any sleep, they couldn’t do normal stuff like go out to dinner, go to church, just normal stuff. It can be very stressful being a parent and respite opportunities are very important.
What advice would you give to parents of children with autism?
We’ve got to work on early intervention. If you can’t get services, then make your own early intervention. My book, The Way I See It: A Personal Look at Autism & Asperger’s, is one way to learn.
For older kids, parents need to be motivating them and figuring out what the individual CAN do. Let’s say it’s a person with more severe challenges. Well, parents are often too quick to dress them. Instead, take the time to teach them how to dress themselves – motivate! If the child is good at math and is bored with “baby” math, then give them college math books if they can do it. If he has art skills, enhance those skills.
I’ve also seen way too many kids ending up in the basement and going nowhere. What makes me crazy is one smart kid who ends up in the basement playing video games, and another one just like him has a cool job out in Silicon Valley. One day I’ll be visiting a big name Silicon Valley company, and the next day I’m at an autism meeting and a mom comes up to me and she’ll say, “He’s 12 and I can’t get him out of the basement” or another mom will come up and say, “I pushed my child, I got him out doing things, he’s got a job and he’s loving it!”
There are two kinds of moms, there’s really a fork in the road for the fully verbal adult with autism: One that will have a child in the basement playing video games (gaming disorder is now an ICD 11 designated disorder) and one that will have a child that can get out and have a life with a career, because they were motivated by the parents. This is what I’m seeing. Then another day I’m down in the maintenance shop at a meat packing plant and they can’t hire people for skilled trades right now because nobody introduced these skills to different kids in their school. There is a gigantic shortage of workers for skilled trades.
I like what Stephen Hawking, the famous astrophysicist, has to say about disability: “Concentrate on things your disability doesn’t prevent you from doing well….” He could do math in his head – about the only thing he could do well, and that’s what he did. There is a tendency to develop a handicapped mentality. I see too many parents who have a smart kid and they don’t push them enough.
The other thing to tell parents who have a younger child who isn’t talking is that children can look very severe when they are little – I was one of those kids. So, you do your early intervention, and then you’ll know after a few years what his level is. I’m having lots of parents still coming up and telling me, “Well, the doctor says he’s going to go nowhere.” Can you believe they are still saying things like that?
There is a tendency for parents to try all types of crazy alternative treatments. For example, people trying hyperbaric oxygen chamber therapy and finding out it doesn’t work. Well, I never promoted that because I never could find even anecdotally that it worked when I asked the family a lot of questions. It’s the same with early intervention, it should be started as soon as possible. Parents need to stick with the science from the very beginning.
I talk to low-income families in the southeast where there are little to no services. I tell them to get the grandmothers from your church and suggest they read these books. Start working with this child and you start working with them now, because the worst thing you can do is to do nothing. Don’t wait. You’ve already received a diagnosis – it’s called “He doesn’t speak, and his behavior is a mess.” Start working on him now.
The viewpoints expressed in this article do not reflect the opinion of the Autism Spectrum News Editorial Board or the Publisher, Mental Health News Education.