The question I receive the most: “A family member who is on the autism spectrum is also experiencing severe depression. What can I do to help them?”
I offered some initial thoughts in a recent post, but this time around I wanted to focus on a very specific facet of this issue. (Click here for a post that collects and summarizes every article in the Aspergers and depression series.)
One of the recurring themes in these questions is not just depression; it’s that the person is having a hard time accepting the diagnosis. The individual is described as hating their spectrum traits to such an extent that they refuse to accept the diagnosis or even discuss it. Those writing in about this frequently report that they have tried to offer positive, practical descriptions of the spectrum, yet find that this approach is only making things worse.
With this in mind, I thought I would relate my own experiences with this issue and then describe some of the concepts that eventually helped me manage the negativity.
When I started therapy at the age of 30, I went in having struggled for many years with depression and social isolation. I had never been able to make sense of my life and felt both angry and humiliated by my inability to navigate even the most basic social interactions.
The problem is that my goal in attending therapy was to become like other people. I thought I could learn how to minimize my differences and transform into a completely different person.
What happened instead is that I was diagnosed with Asperger’s Syndrome (now Autism Spectrum Disorder). It was explained to me that a lot of my challenges with social pragmatics were the result of neurological differences. Differences that were just part of my life, and that I should therefore accept.
Not what I wanted to hear. At all. I wanted to stop being myself…I wanted a magic transformation (I definitely had a destructive Pinocchio mentality about the whole thing). So for me, receiving a spectrum diagnosis was a deeply bitter experience. I felt blindsided by it. I wasn’t interested in “acceptance” or learning to feel good about it.
I reacted with a lot of anger and, for a long time, refused to believe that it fit. I made very clear during therapy sessions that if we were going to continue, references to “that topic” were off the table.
I think about this period of my life every time I’m asked how to help someone feel okay about their diagnosis. I know I started off angry. I know I got to a better place. So I think a lot about how that happened, how I moved from one place to the other.
I can think of five general points to consider when navigating the issue of diagnosis rejection.
If someone is feeling angry about their spectrum diagnosis, pressuring them to accept it can backfire. If they feel like their reaction is being ignored…if they feel like they are being forced into a mindset that is currently painful to them…they are much more likely to double down on the rejection.
In other words, pressure can make someone less likely to accept a diagnosis, not more likely. That’s what happened in my case. Someone telling me about “acceptance” and the benefits of being on the spectrum…it just drove me in the polar opposite direction. In response to any argument “for”, I would develop an argument “against”.
I’m not saying completely avoid the topic. I’m just saying be very cautious with how the topic is referred to and framed. If someone feels like they are being pressured in a certain direction, they may very well shut down and become less likely to budge.
The advice to avoid pressuring: it’s easier said than done. If someone is angry about the diagnosis, almost any references to the spectrum can make them feel like they are being pressured. So, how can you broach the topic without triggering the negativity?
To the extent that you can, it’s helpful to avoid words/phrases that might be perceived as “positive” and replace them with alternate phrases that are more generic and neutral (at least early on).
For example, don’t say that differences are “unique” or “strengths”…just say they are differences. They’re not bad, they’re not good…they’re just different.
For those averse to hearing positive assessments, it might be easier for them to accept more neutral phrasing. It’s a small step, but it can be a starting point for beginning to move away from the negativity…something I learned from personal experience.
When I started therapy, I was encouraged to try something called “cognitive reframing”, where you take your own negative descriptions about yourself and re-word them as positive statements. I flat out refused to do this. I wouldn’t even accept that my statements were negative or influenced by depression…I viewed them as accurate; the end.
I told the therapist that if reframing was part of the deal, I was out of there. She dropped it, and then slowly worked on establishing alternate phrases that I would agree to. I wouldn’t go positive…I wouldn’t agree that my negativity was wrong…but eventually, in some cases, I agreed to a more neutral phrasing.
Which gets back to the first point about not pressuring. The more you can collaborate and not pull in different directions, the better. If you can mutually establish a more neutral set of reactions to the spectrum diagnosis, you can avoid lapsing into the kind of power struggle dynamic that often makes the goal of acceptance even harder to achieve.
This is stating the obvious, but when someone is reluctant to accept a spectrum diagnosis, it’s at least in part because they do not want to feel different. They can see the social world around them…they can see others making connections so much more easily…and it can be very painful to feel that your differences have pushed those connections out of reach. (It’s not true that these connections are out of reach…autistics can thrive and do extremely well when it comes to forging strong bonds with others…but I know at times it can be hard for some to believe that.)
The point is that self-hatred can create the temptation to idealize the lives of others. When you feel like you’re on the outside, watching the reindeer games from a distance, it seems like other people have something you don’t. Somehow, some way, they’re doing things “right”…things you can’t seem to replicate.
Helping people come to terms with a spectrum diagnosis will sometimes mean helping them avoid distorted thinking about other people. Really what we’re talking about here is managing depression…but this tendency to idealize others can be a huge factor for those feeling angry about a diagnosis.
The goal is to listen, not only to how a person describes themselves, but to how they describe other people. If it sounds like they are idealizing others, that is going to be a major source of self-loathing. To the extent that you can, try to bring some clarity to these issues. Offer neutral, objective explanations for social behavior. Don’t denigrate or belittle others…adding more negativity to the discussion can do more harm than good. But where possible, try to find measured, practical descriptions as a counter to self-defeating narratives.
If doing this makes the other person angrier, elicits even more negativity, fall back on the “go easy/go neutral” sections above and give them some space.
A common mistake is to put too much emphasis on accepting the diagnosis and not enough on the underlying barriers to that acceptance. Sometimes, there are bigger issues to focus on…the diagnosis stuff can come later.
Let’s say someone is depressed because they feel ashamed about their differences. If they are diagnosed as being on the spectrum, simply accepting that is unlikely to put a dent in the depression. Self hatred is complicated. It involves so many nuanced, interconnected issues that a diagnosis in-itself is not enough to address the way it operates.
However, once those issues are sorted through…once a person has a handle on the depression…it is so much easier to feel more at peace about life on the spectrum.
In short, if the diagnosis is an issue and it’s lumped in with depression and other emotional difficulties…work through some of the other issues first. Diagnosis acceptance may very well be easier if it is preceded by self-acceptance.
It’s entirely possible that the reverse can also be true. Many, many people feel relieved upon receiving a a spectrum diagnosis; it allows them to retroactively make sense of a lot of their life experiences. I just know that in my case, getting a handle on the depression made it a whole lot easier to participate in discussions about the spectrum.
Give it Time
Absorbing a diagnosis like autism spectrum disorder not only means developing a new understanding about your self; it also means developing a new understanding of the world and your place in it.
Autistics need time to understand who they are…they need time to sit with that understanding…they need time to develop a sense of self that can integrate with a world that is frequently hostile towards difference. I know it’s deeply painful to see someone you love struggle with self hatred, but it’s important to give them the freedom and emotional space to just be so that they can sort through these shifting internal landscapes.
Being patient, giving them as much time as they need: this is also a way to show respect. And nothing builds a stronger sense of trust than feeling respected. They may not be willing to discuss the diagnosis now, but if they know you respect what they are going through, that can leave the door open for discussion at a later time.
Self-hatred, idealizing others, anger about a spectrum diagnosis: these are signs of serious depression. Don’t assume that it’s a phase, that they’ll “get through it”. Find local mental health professionals (preferably ones with autism spectrum experience) and get help for these potentially lethal challenges.
I was able to work through the depression and anger about the diagnosis, but it took years…and it required the help of someone who had been trained in these issues.
Everyone on the spectrum is different; I can only ever speak for myself, so the ideas in this post are certainly are not going to be applicable in all cases. The goal here is simply to think about this issue and hopefully offer ideas that may be beneficial, at least in terms of starting a conversation.
I am discussing the challenge of coming to terms with an ASD diagnosis. It’s important to note that females can have a hard time even receiving a diagnosis. Women are notoriously underdiagnosed due to false, outdated stereotypes about autism and Aspergers. To this day, many people still view the spectrum as a condition primarily impacting males. It’s not. Women are just as likely to be on the spectrum, they just have a much greater chance of being misdiagnosed or not diagnosed at all.
There are many great blogs and resources offering female perspectives about the autism spectrum. I would strongly recommend reading these before discussing the diagnosis with a clinician, that way you can go in with as much information as possible. (The are more terrific sites than I could list here, but Autism Women’s Network is a great resource. Blogs by Cynthia Kim, Judy Endow, Amy Sequenzia, S. R. Salas, Lynne Soraya, just to list a few, are highly recommended.)
Given the widespread problem of females being misdiagnosed, don’t hesitate to be a strong advocate for fair and accurate assessments. If you seek help and feel like you’re not being listened to…leave ASAP, find someone else.
Finally: this post is part seven of an ongoing look at the interplay between depression and autism spectrum disorder. You can find links to the previous posts below. I’m continuing to write about this topic because of the questions I receive about helping autistics manage depression…and because of the search phrases that bring people to this site. It’s pretty clear: this is an issue we need to be talking about.