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Mental Health Toolkit - Online Version
Table of Contents
Introduction Overview What Challenges Do Autistics Face When Seeking Therapy? Lack of therapists who understand autism communication needs. De-emphasis on Mental Health Lack of Knowledge Around Co-occurring Conditions Lack of Individualization Structural Issues Let's Focus On: Some Good News! Lots of People Are Trying to Implement Useful Solutions Let's Focus On: How This Toolkit Can Help A Guide for Autistics, Parents/Families, and Professionals Key Questions Question 1: How do I find the right therapist? → Where to begin? → I think I found someone who could be a good fit - what’s the next step? “What are your clients’ common treatment goals?” “Tell me about your office space.” “What can you do to help me get comfortable with you?” → I found someone I like and we are starting sessions - should I still be vetting them? Question 2: How Can I Get the Care I Need Based on My Existing Coverage? Question 3:What Can I Bring With Me To Meetings and For Moments of Crisis? For More Information
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Introduction
Welcome to the Autism Grown Up Mental Health Toolkit. Addressing mental health can be a daunting step, and it makes us so glad that you trust us enough to take a chance on this toolkit. Mental health can be a fraught subject for autistic individuals at any age. Research shows that we are seeing more mental health needs that are requiring attention are appearing as individuals get older, into adolescence and adulthood.
For a long time, it was common practice to treat autism as a mental illness, and that attitude has not entirely disappeared. Many autistic adults are rightly skeptical of the programming that is available for addressing mental health concerns, and frankly not all professionals in the field are well equipped to provide appropriate supports.
Despite these challenges, many autistic adults do seek out treatment for a wide variety of mental health concerns and are happy with the treatment they receive.
It is our belief at AGU that autistic people should have access to mental health programming when it is needed without having to worry about the way they are stigmatized or discriminated against while doing so.
In the absence of a systemic solution, we have put together this guide to help navigate an imperfect system to receive the support, care, or treatment that you need.
Everyone deserves a safe space where they can address mental health concerns big or small and everywhere in between. Common mental health concerns for our community include navigating co-occurring conditions such as Attention Deficit Hyperactive Disorder (ADHD), anxiety, Obsessive Compulsive Disorder (OCD), sleep disturbance, and depression. Finding a provider or therapist is often the first step in diagnosis, receiving therapy, and finding long-term supports.
We hope this toolkit will offer some useful tools for finding a system that is helpful and effective for you or an autistic person in your life.
Overview
To understand how to find useful mental health supports, it can help to review some of the challenges that autistics and their families face when seeking out therapy or treatment for a mental health concern.
Some of these things can be pretty obviously wrong when they happen, but it’s all too easy to think some of these problems are just “the way things work” and not a sign that this therapist is not a good match.
What Challenges Do Autistics Face When Seeking Therapy?
- Lack of therapists who understand autism communication needs
- De-emphasis on Mental Health
- Lack of Knowledge Around Co-occurring Conditions
- Lack of Individualization
- Structural Issues
Lack of therapists who understand autism communication needs.
One basic and frustrating barrier to finding a helpful therapist is the lack of professionals who have an understanding of how to work with people who have different communication needs.
This is especially true when it comes to autism and the wide variety of communication needs that different autistic individuals can have.
The issue is so commonplace that even some advocacy organizations recommend trying to teach your therapist about autism if they can potentially meet some of your other mental health needs.
It is true that depending on where you live and what kinds of resources are accessible that sometimes compromise may be necessary.
Our preferred takeaway, however, is that it is possible for therapists to learn how to meet these communication needs, and those who do should be happy to talk about it when asked.
While you may find compromise to be necessary in your case, it is reasonable to expect and prefer a therapist who has experience with autistic clients.
It is also reasonable to expect and prefer a therapist who supports individuals who use Augmentative and Alternative Communication (AAC), who are non-speaking, and more based on your specific communication needs.
De-emphasis on Mental Health
This is also why we don’t strongly believe in the recommendation to teach your therapist about autism - the more time your therapist takes asking you to explain your autism the less time you have to focus on the issues that you are actually here for.
You deserve a therapist who is capable of honing in on your needs and only putting as much emphasis on autism as is necessary to provide you with a safe and supportive environment.
If your therapist doesn’t seem terribly concerned about getting to the thing you wanted to talk about that day, it’s probably time to look for a new one.
Lack of Knowledge Around Co-occurring Conditions
There are multiple mental health conditions that occur more commonly in autistics than in the general population.
As mentioned, common co-occurring mental health conditions can include anxiety, depression, ADHD, OCD, and sleep disturbance.
Multiple studies have shown that the effects of co-occurring conditions are one of the primary reasons that autistics are at risk for a shorter lifespan, compared to virtually zero impact from autism itself.
If your therapist does not understand the types of mental health issues that autistics are more likely to face, they are potentially depriving you of treatment that could considerably improve your quality of life and overall health.
A therapist with a strong understanding of co-occurring conditions with autism should feel very comfortable discussing the subject and how to approach it in a way that is most comfortable for you.
Lack of Individualization
This one is kind of tricky because it can be a problem even if your therapist is reasonably well trained in working with autistic clients.
Unfortunately, even with training and good intentions, some therapists can fall into the trap of adopting a one-size-fits-all approach to any autistic client that walks through their doors.
As you may have already guessed, there are way too many differences between autistic individuals for this approach to work!
In addition to some of the other problems we have discussed, autistic also struggle to receive appropriate treatment and support from their therapists, which can have a direct impact on long term health.
It’s not quite as easy to ask a therapist directly about this topic, because anyone can promise they will individualize their treatment.
Instead it can help to look for signs that your therapist wants to know how they can make sure you are comfortable, make sure they understand your goals, and make sure you are in agreement about the basic facts of any situation you discuss.
Structural Issues
All of the challenges we’ve discussed so far are the types that pop up once you are able to speak with a therapist, but there are also numerous institutional barriers that make it challenging to meet a therapist at all:
- Issues like high staff turnover rates can affect your ability to maintain continuity of care.
- Funding or insurance issues can limit what types of services individuals are able to afford and receive.
- The most common forms of therapy are not always helpful to autistic clients and autistics are prescribed antidepressants and antipsychotic medication at a significantly higher rate than the general population.
While we should continue to try to improve and reform the current system, autistics looking for support right now must unfortunately navigate its existing challenges.
All of these challenges by themselves can be difficult, but when they intersect things can get even harder. We have had many community stakeholders share how one problem like finding a compatible therapist is compounded by another like finding a therapist that will accept your medical coverage.
As always we do not like the idea of anyone having to compromise on their care, but compounding issues like this can make it a necessity for some autistics depending on their personal situation.
Let's Focus On: Some Good News!
Lots of People Are Trying to Implement Useful Solutions
Despite the challenges we just discussed, we are happy to say that there have been some real positive developments in the last several years and there continues to be an undercurrent of change in the field.
Mental health clinicians as a whole are becoming more familiar with autism, and have become much better at identifying it in undiagnosed adults.
Clinicians are also increasingly understanding that traditional care is not always effective for autistics. This has manifested in clinicians increasingly seeking out this training and an increase in studies on whether established treatments are helpful to autistics with co-occurring conditions.
A National Institutes of Health study focused on the topic attributed much of the professional improvement in recent years across multiple countries to increased dialogue and education, so it’s very important to keep talking about this issue!
Our hope is that however challenging the situation may be now, it will only get better in the future.
Let's Focus On: How This Toolkit Can Help
A Guide for Autistics, Parents/Families, and Professionals
The primary purpose of this toolkit is to help autistic individuals and members of their support network navigate the existing challenges of the system as best as circumstances will allow. We also believe that professionals wanting a head start on identifying common issues and needs can benefit from this relatively compact guide as well as many of the sources that we link in the text.
When Should I Be Looking for a Better Option?
One unfortunate reality of substandard care is that we often go along with it because we are being told by powerful institutions that this is the most effective treatment and we believe them. One major reason we wanted to release a mental health toolkit was because we saw multiple organizations suggest autism parents try to train their therapist in working with autistic patients.
While we understand that in challenging situations an individual might decide compromise is the best option, we do not like the idea of any autistic individual or family member thinking it is normal or appropriate that they have to do something like this just to receive care.
While we cannot control the number of options available to any individual, we believe that we can help individuals decide whether or not they should be looking for a better option.
Hearing From You
We believe in the importance of offering practical advice that can work in imperfect circumstances, which is exactly why we put together this toolkit! But we also want to keep the conversation going about the systemic issues that affect autistics seeking mental health treatment. If you have a story or experience you want to share with us, we would love to hear from you. Contact hello@autismgrownup.com and let us know what is on your mind!
Key Questions
There are many factors that go into a positive therapeutic relationship and the importance of those factors can depend on your individual circumstances. Questions about these factors usually fit into three broad categories:
How do I find the right therapist?
How can I get the care I need based on my existing medical coverage?
What can I bring with me to meetings and for moments of crisis?
In the next few sections, we will discuss many of the potential answers to those questions. Ultimately it will be up to you to decide which answers are best for your individual situation.
Our hope is that these sections will serve as a helpful starting off point for your personal decision-making process. If you find a therapist that is a good match – that’s fantastic! If you are still on the search, keep going and trying! You or your child is worth finding a therapist that is a good match.
Question 1: How do I find the right therapist?
→ Where to begin?
One of the trickiest parts of starting out is that there are so many different therapists out there with different qualifications, and it can be difficult just from browsing to determine who is worth investigating more closely. One helpful way to get started is by browsing a therapist directory like the one at Choosing Therapy.
We like this particular directory because it neatly organizes therapist profiles into specialties, licensure, available treatment approaches, scheduling, and potential costs. It also gives you the option to focus on therapists who specifically list autism spectrum disorder as a specialty.
It is worth noting that therapists are filling out their own profiles on this website, and not everyone will fill out the form completely.
As a general rule, if they do not see it as important enough to put on their own profile or website then they are not likely to have the kind of experience you are looking for.
In Choosing Therapy’s Guide to Finding a Neurodiversity-Affirming Therapist they recommend looking at four main factors when deciding on which therapist to pursue, and we added a fifth for good measure:
1. Licensing, Certifications, Education
Choosing Therapy emphasizes the importance of making sure your therapist is licensed to practice psychotherapy in your state.
Credentials can include “licensed clinical social workers (LCSWs), licensed clinical psychologists, licensed marriage and family therapists (LMFTs), licensed mental health counselors (LMHC) and licensed professional counselors (LPC)” as well as psychiatrists.
As mentioned above, this is also a good time to see if they list anything related to autism and/or your co-occurring conditions.
2. Personality Fit
Many of the listings and particularly clinician websites will include some extended answers from the clinician themself, and it can be a great way of getting an early sense of how your personality will fit with theirs.
Some people might prefer a therapist who is frank and open no matter what while others might prefer a therapist who is more deliberate and thoughtful.
While you’ll never be able to get a full sense of a person from a short bio, you may be able to spot some promising signs or red flags that determine whether a given therapist is worth further investigating.
3. Scheduling and Availability
File this one under things that seem obvious but can have serious implications when you consider the importance of continuity of care and that a therapeutic relationship can last for years.
Does it look like your prospective therapist generally has pretty good availability? Can you identify specific and consistently available times when you would be able to attend sessions? Can you expect your therapist to be available in an emergency and if not is there a contingency plan?
Checking schedules as early as possible can minimize the headache of finding that perfect therapist only to discover it will be months before they can realistically see you.
4. Cost
At this early stage you might not be able to discern what your exact options are for determining your final costs with a given therapist, but you can typically get a good hint by looking at their profile at things like the cost of a session and whether they have a sliding scale fee.
Choosing Therapy recommends being mindful of cost sustainability as the emphasize the importance of continuity to good long-term care.
5. AGU Addition - Available Treatment Approaches
One thing we were excited to see on the Choosing Therapy directory that was surprisingly not in their guide to finding a neurodivergent-friendly therapist was the option for therapists to list their available treatment approaches.
This is a huge boon for autistics seeking a new therapist because of all the problems we discussed in regard to a lack of alternative treatment approaches.
For autistics who have already tried some of those treatment approaches it can be a helpful way to eliminate therapists who only offer the same forms of treatment and support that haven’t proven helpful.
For those who have yet to try therapy, it can offer a sense of what you might actually be getting out of your experience.
→ I think I found someone who could be a good fit - what’s the next step?
Typically once you have selected a potential therapist you will not dive into sessions right away.
It is much more common to have an initial phone call or visit that is much lower pressure and should be seen as more of an opportunity to hone in on how equipped your potential therapist is to work with autistic clients and how well their personality fits with yours.
Choosing Therapy’s post on the subject has some helpful questions included, but we especially loved these three suggestions from neurodivergent-friendly therapist Rose Reif to make sure your therapist will not shame you for being on the spectrum.
Under each question we will include some potential red flag and green flag responses.
“What are your clients’ common treatment goals?”
🟩 Green Flag Responses:
Any good therapist should see their role as supporting their client in achieving the client’s goals. This attitude should not change when a client is autistic. A good green flag for a therapist is that they make sure to frame this answer from the client’s point of view.
Rose Reif lists some good example answers such as coping with anxiety, being in a romantic relationship, advocating for themselves at work, and stopping drinking or smoking pot.
🚩 Red Flag Responses:
Be wary of a therapist who speaks about their autistic clients’ goals like they are writing an IEP, in that they are focused on meeting a set of standards.
While it is understandable that a therapist might try to break down a broad goal into more manageable steps, it can be telling when they do not keep the client’s big picture goals in front of mind.
Many therapists also fall into the trap of hearing an autistic client’s goals, but assuming the barriers to that goal are rooted in the client’s autism.
If the way they describe their clients’ goals doesn’t match up with the way you’d describe your own goals, it’s possible that this therapist won’t be able to help you achieve your goals either.
If they start talking about ways to “mitigate” or “eliminate” stereotypical autistic behaviors in a response to a question about their clients’ goals, it’s time to hang up the phone.
🚩 Special Red Flag Responses for Parents:
One common issue that Reif cites with therapists is that they will adhere to the goal of the parents rather than listening to the child. Oftentimes, therapy is a meeting of the team and collaboration. However, at its core it should always be child or the individual-focused.
In these situations problems can go on for much longer than they need to because the parents feel like they are being heard and may not even realize that their child is missing out on necessary care.
If a therapist gives you an impression that they are ignoring what your child is saying because it contradicts you, it’s likely best to stay away.
If you are a parent interested in making sure your therapist is looking out for your child first, you can find a great guideline for identifying more warning signs here.
“Tell me about your office space.”
The answer that a therapist has to this question can be extremely telling in terms of how much thought they have put into catering to autistic clients.
A good answer here does not guarantee a perfect therapist, but it’s a good sign you’ve found someone who does more than just claim to care about autistic clients.
🟩 Green Flag Responses:
Any good therapist should see their role as supporting their client in achieving the client’s goals. This attitude should not change when a client is autistic. A good green flag for a therapist is that they make sure to frame this answer from the client’s point of view.
Rose Reif lists some good example answers such as coping with anxiety, being in a romantic relationship, advocating for themselves at work, and stopping drinking or smoking pot.
🚩 Red Flag Responses:
The biggest red flag here is no meaningful answer at all.
Certain noisy or smelly items can stand out as particularly incompatible, but the most obvious concern is when your potential therapist has not thought enough about the issue to offer a meaningful answer.
It’s possible that they don’t even know enough about their autistic clients to understand that their office decor can actually matter.
Do not entrust someone who cannot answer this question with your mental health; who knows what else they still need to learn about just to be able to provide you with a bare minimum of care?
“What can you do to help me get comfortable with you?”
🟩 Green Flag Responses:
Rose Reif understands not just that therapy can be intimidating for an autistic person, but the ways that it can be intimidating and some effective options for making the situation more comfortable.
Among the options she lists are other potential venues for a session, bringing someone else along, allowing for as much time as needed to get comfortable in a space, working up from shorter sessions.
Any therapist who can explain the proactive steps they are willing to take to ensure client comfort is likely someone who has put a reasonable amount of thought into the process.
🚩 Red Flag Responses:
On the other hand, therapists who express confidence that they work well with their clients and have not had any issues have likely not put much thought at all into the potential challenges faced by their autistic clients and may not even notice when there is an obvious problem.
Therapists do not create safe spaces for autistic clients by having the right “instincts” on how to interact with them.
They do so by learning about common challenges faced by autistics seeking mental health treatment, learning/implementing common solutions, and developing the flexibility to differentiate for individual needs.
→ I found someone I like and we are starting sessions - should I still be vetting them?
The short answer is absolutely! As the client, you always have permission to critically evaluate and/or reevaluate your relationship with your therapist.
Sometimes therapists with bad habits slip under the radar and you only find out once you’ve had a few sessions with them.
Sometimes therapists change their opinion on the best kinds of treatment for their clients and it’s no longer a good fit. In some cases you might change and just be in a place in your life where this therapist is no longer a good fit.
For an additional list of criteria by which you can evaluate your therapist on a longer timeline, we recommend this article from the Aspergers/Autism Network.
It lists a range of qualities that the “right’ therapist can have that might also not be so easy to determine from their online profile or an initial meeting.
If you initially liked your therapist but find they are not living up to certain standards that you think are important, that is a good time to consider whether you should seek out a new therapist.
Question 2: How Can I Get the Care I Need Based on My Existing Coverage?
While we wish we had a blanket answer to this question that applies to everyone, the reality is that your coverage and network can have an impact on what services are available to you and how much you pay out of pocket.
While federal law in the United States specifies that mental health services are required for Medicare and Medicaid enrollees and every state has mental health parity laws for insurers, the actual implications for coverage on a state-by-state basis can vary widely.
For example, there are still several states that do not include autism in their mental health parity laws.
Because it would be impossible to outline every scenario that could come up depending on your coverage and the state you live in, we want to present some general questions you can ask a practitioner or representative about a given treatment that is most likely to get you to an actionable answer:
- Does this treatment qualify as one of the services required by our state’s Medicaid laws?
- Does this treatment qualify as a service that my insurer legally must cover under our state’s mental health parity laws?
- If this treatment is not covered, are there any comparable treatments that could be covered?
- If you do not work with my medical coverage, do you know anyone who offers the same services and is in my network?
- My medical coverage is [insert medical coverage here] and I want to make sure I am maximizing my resources when it comes to treatment. Can you help me with that?
The good news about this unfortunate process is that it is another great method for vetting a potential therapist. A good therapist should be willing to work with you on this process and make sure you are not wasting your time and money when a better resource might be available. With that in mind, we are going to break out the green flags and red flags one more time for this section.
🟩 Green Flag Responses:
While any therapist has the potential to be constrained by the system they are working in, a good therapist should be able to have a frank discussion about the options you have available, why those options are available and not others, and which of those could be best for you based on your mental health goals.
🚩 Red Flag Responses:
Any answer, positive or negative, that brushes off your potential concerns related to cost is a serious red flag.
A negative answer is an obvious impediment, but a therapist who tells you things will be fine without explaining how they will be fine may not be considering your best interests above their own.
They might believe they are providing adequate care for the price you are paying, but how do you know that’s the best service you can get?
If you can do better, then why should you have to settle for adequate care? If you don’t feel great about the way your financial questions are being answered, there’s a good chance you will continue to feel not great about it down the line.
Question 3:What Can I Bring With Me To Meetings and For Moments of Crisis?
After we’ve shared so many comments about how we don’t like the idea of autistics or their parents having to train a therapist on how to work with autistic people, it’s only fair that we point out some of the things that will help your therapist understand you or your child as an individual. Also, this is the *nudge nudge* to all of the professionals reading this toolkit.
As we know, the ability for therapists to individualize treatment is incredibly important for autistics, and sharing some personal information can go a long way towards making that individualized treatment a reality. When thinking about what information to include, it can help to divide things into a couple of categories.
You can document this in a notebook, in the Notes app on your phone, or wherever is the most easily accessible to you.
Category 1 – Strengths, Interests, Needs, and Triggers
This category primarily focuses on the session to session work you will be doing with your therapist and what you need to be able to navigate those situations effectively.
Under strengths, list any and all of your strengths. These can help your therapist tailor a session and treatment to meet you at your best.
Under interests, list any interests you would like your therapist to know about. A good therapist will know that it is important to connect with you and develop a positive therapeutic relationship that includes better knowing you and your interests.
Under needs, list anything you might personally feel the need to do during a session and how you would prefer the therapist to handle the situation.
Under triggers, list anything that the therapist could potentially do that may act as a negative trigger for you. The aim of this list is to give a good therapist advance notice about how they can best support you when you need your own space and how they can avoid unintentionally harming you ahead of time instead of needing to have a conversation when it happens.
Of course you may not be able to anticipate every situation before you get started, so you always have the ability to update your list as needed!
Category 2 - What to Do in a Crisis
Some people reading this may wonder what even constitutes a crisis in their own situation, and that is perfectly OK! Not everyone will have a crisis in mind that they need to inform their therapist about.
Some common example crises to consider: You can think about meltdowns that may get escalated, moments of aggression to oneself and/or others, panic attacks, shutdowns, feeling stuck in a thought pattern, and burnout.
If you have a strong understanding of how to address that crisis, then you can save yourself and your therapist a lot of heartache by offering some guidance in advance. This strategy can help you and others feel more prepared and proactive instead of reactive when a situation like this or something similar arises.
Whether it is a medical emergency, an emotional crisis, or something else entirely your therapist should take this information very seriously and affirm that they will use it if necessary.
For More Information
Here are some more resources for you to explore on this topic area. Note that not all information presented on these sites is neurodiversity-affirming.
Research
Autism
National Autism Indicators Report: Mental Health
Life Course Outcomes Program, A.J. Drexel Autism Institute, Drexel University
Community Mental Health Services for Autistic Adults: Good News and Bad News
Autism in Adulthood
Blog
How to Find Support for a Mental Health Concern
Organization for Autism Research (OAR)
Autism’s Clinical Companions: Frequent Comorbidities with ASD
Children’s Hospital of Philadelphia
How to Find a Neurodiversity-Affirming Therapist
Choosing Therapy
Rose Reif
Asperger/Autism Network
Resource Page
State Mental Health Parity Laws
Life Course Outcomes Program, A.J. Drexel Autism Institute, Drexel University
Choosing Therapy
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