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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. 

Welcome to the Healthy Eating Toolkit, an informational guide for Autistic adults seeking to evaluate or find the right nutrition plan that approaches from a standpoint of personal autonomy and self-determination. 

If you spend any amount of time listening to how people talk about food and diet, “healthy eating” might feel like a loaded term. What makes someone’s diet healthy? Is it eating a certain number of meals a day? Is it getting all the correct nutrients? Is it making sure that we feel good and that what we eat isn’t causing us bodily distress?

We hope one major takeaway you get from this toolkit is that you can choose how you want to prioritize these types of questions based on your needs, goals, and personal capacity at this time. We also hope this toolkit can help with building a personal framework for making those choices.

A note on precision: Throughout this toolkit, you are going to see information about how to track your total nutrition based on what you eat day to day and wonder exactly how precise you need to be in your measurements. While a loose measure of what we eat can help us get a better idea of our needs, it is also not necessary to be 100 percent exact.

Nutrition is not an exact science, and as long as we are trying to achieve a reasonable approximation of our goals then it’s safe to feel on the right track. So don’t put too much pressure on yourself to be perfect, the more important thing is to have a pretty good idea of your needs!

A note on what works for you: Throughout this guide, you will see information on nutrition, what it does, and health benefits and risks associated with many different types of foods.

The purpose of this information is not to say that any food is inherently bad or good, or that we must consider every possible health factor in every eating decision to make. The purpose of making this information available is so that you can prioritize based on your needs and resources.

Why a Healthy Eating Toolkit For Autistic Adults?

1. Perception and “Picky Eating”

Many Autistic adults who experience sensory issues with food have had the experience of being questioned or chastised for eating the same safe foods over and over, or for refusing to try a particular food that was offered. While it is true that some individuals may want to expand their palate or try unfamiliar foods, it is not nearly the moral impetus that some people make it out to be. While it is true that some diets might require some help supplementing necessary nutrients, one important aim of this toolkit is to avoid common judgmental tropes around food choices.

2. Managing Nutrition Decisions From a Place of Self-Determination
Many Autistic adults may have also found themselves in the situation of having less control over their diet than they want. It is great that people who want assistance with managing their nutrition have access to people who can help them choose, and it is also important that Autistic adults who wish to manage their nutrition on their own terms have the opportunity and tools to do so.

3. Digestive Issues and Food Intolerance
Studies suggest that Autistic adults as a population are more likely to consume an “unhealthy diet” and exhibit signs of food intolerance. Given the prevalence of digestive issues among Autistic adults it is important to acknowledge this challenge that many people face and to offer a framework of choice that considers the reality that some readers may be working with a narrow set of dietary choices.

When you are just beginning to focus more on personal nutrition, the sheer amount of information and advice out there may feel a little overwhelming! It might feel like everything needs to change at once, and if it doesn’t go right the first time it can feel like a failure.

The sheer volume of discussion about this topic out there can make it easy to forget that diet and nutrition are closely tied to routine and executive functioning and like any other skill tied to our daily living is a process of trial and error and finding the thing that works for us.

That is not to say that some of the nutrition guides out there can’t be helpful! Rather, it is to say that no one strategy or routine will work for everyone, and when a given routine does not lead to your desired outcome it is OK to discard the parts of a strategy that don’t work for you, rather than try to contort yourself to fit a strategy that doesn’t feel right. But what are some ways we can know we are on track to meet our own goals? Let’s go over some of the factors we might want to consider in our eating plans.

Nutrition is an important part of any healthy eating plan! Whatever foods we may choose to eat, one of the most important things we can do in evaluating our diet is to make sure we are getting enough of the essential nutrients to meet all of our body’s needs.

It is also important to remember that while we do need nutrients to survive, there are also lots of ways to get the nutrients we need and we can choose eating plans that account for more factors than just total nutrition.

A basic awareness of our nutrient intake can still be one of the more helpful ways to check in and see if our diet is serving our needs, and an awareness of what we need:

1. Food With Nutrition Labels

When looking at a nutrition label you might notice all kinds of information about the different kinds of nutrients that are in it, but how exactly do we interpret those numbers. The nutrition label is a handy key to decipher what nutrients are in the amount of food that you chose to eat!

The first place to look is at the food’s serving size. Serving size can be a little tricky! Sometimes the recommended serving size isn’t close to what we might think of as a normal serving for us. But we can take an educated guess as to how many “servings” are in the food we actually eat.

Once we have that number, we can multiply all the other numbers on the nutrition label to get a good approximation of the nutritional profile of our meal.

While some nutrition labels will include more information than others, the vast majority will include at least the following: total fat, saturated fat, trans fat, cholesterol, total carbohydrates, dietary fiber, total sugars, added sugars, proteins, and some vitamins and minerals.

According to the FDA, the only vitamins and minerals required to be listed are vitamin D, calcium, iron, and potassium, though manufacturers may list information about any vitamin or mineral they want to.

Once you know how to interpret the nutritional information, the other helpful information you can find on the label is the ingredient list. If you struggle with tolerating certain foods or have allergies, the ingredient list can be a valuable tool for avoiding foods that appear safe but might have a problem component.

2. Food Without Nutrition Labels

While many foods come with nutrition labels, there are many circumstances where nutrition information is not readily accessible. It’s not available or easy to find at all restaurants, and many raw foods don’t come with an exact label explaining what is in it. If you have a food item and are uncertain of the nutritional profile, it is possible to find general nutritional profiles of generic foods like meat or vegetables online.

When you find a nutritional profile for a given food, you can read the information on it much like you’d read the information on a nutrition label, using serving size as a basis for determining what nutrients are in the portion you prefer to eat!

In this section, we are going to break down the types of nutrients and their functions.

Carbohydrates are one of our most important sources of energy and also help with the cells in our body.

Total Sugars and Added Sugars

A type of carbohydrate that primarily provides energy. Added sugars is a term for sugar that was added to the natural food item by the manufacturer during the production process.

Dietary Fiber

Dietary fiber is a complex carbohydrate that primarily helps with digestion and maintaining regular bowel movements.

Proteins the the building blocks of healthy muscles. They are also essential for the body to make hormones and enzymes. 

Fats do everything from storing energy in the body to maintaining cell structure and insulating our internal organs. Fats are a necessary part of our bodies and how they work day to day. So they are a necessary part of a healthy diet.

Saturated Fat

Saturated fat is a type of fat that is generally considered unhealthy compared to other types of fats. The reason for this is that saturated fats are more likely to contribute to issues like heart disease. This is because they are more likely to get caught up in our blood vessels and cause circulatory issues. Despite some associated health risks, saturated fats are a normal part of any diet in moderation.

Trans Fat

Trans fats are another specific type of fat that are more likely to contribute to heart disease. They are most commonly found in processed foods.

Cholesterol

Cholesterol is a “waxy, fat-like substance” produced by the body from certain foods. It is also necessary for essential functions such as making cell walls, body tissues, and hormones. Certain types of cholesterol can also contribute to high blood pressure and heart disease by getting caught in our blood vessels. But, cholesterol is a crucial part of any diet and most helpful in moderation!

Eating is both a necessity and a tool for accomplishing a variety of goals pertaining to our health and day-to-day energy needs. Some of us might imagine an optimized nutritional outcome when it comes to our nutrition goals, while others might be focused on solving a particular problem or finding a reliable consistent system.

The most important things about your diet are whether it contributes positively to your wellbeing, and if there are any parts about it that you feel are contributing negatively to your wellbeing. Let’s start by taking a look at some positive outcomes we might envision when setting goals for our nutritional intake.

In addition to the positive personal nutritional goals we mentioned above, we also alluded to the possibility that some people may seek to change their diet to address a particular digestive or sensory challenge.

Alternately, others may feel that the traditional definition of a healthy diet might be inaccessible to them because of the number of foods that cause digestive issues or sensory challenges.

Here are a couple of lists of some types of eating and digestive challenges that many Autistic people face as part of their nutritional journey.

Everyone has a different approach when it comes to mealtimes. Some people are very rigid about when they eat and will want to eat at specific times even if they aren’t consciously sticking to a schedule! Others might eat at different times during the day depending on how they are feeling or rely on a strict time schedule so they can keep on track with other tasks.

Each strategy has its pros and cons, the important thing is how it serves your needs and fits into your body’s needs and signals.

While everyone’s needs are unique and people may land on different solutions when it comes to the exact makeup of their routine, we hope some of these seed strategies will serve as a helpful starting point.

From there, we can evaluate how well our strategies are serving us and whether we need to make adjustments or find an entirely new strategy. So let’s get started!

1. Identifying what you already do and putting it on a calendar.
2. Setting a schedule you think will work within your parameters.
3. Setting an idealized schedule and working toward it.
4. Creating a checklist of cooking/eating tasks you need to complete each day, even if it doesn’t always happen at the same time.
5. Picking a day to plan out meal times and cooking schedules each week.
6. Getting the food you want to eat and planning the week based on what you have available.
7. Designating days for eating out versus cooking at home, and designating more time for cooking days.

• When do I usually wake up?
• How soon do I usually feel hungry?
• How soon do I feel like I need more energy?
• Is the time I am eating my first snack or meal aligning with when I am feeling hungry or when I am feeling low energy?
• Does the time that I eat feel like it fits comfortably and sustainably with my routine?
  • If not, what do I want to try to change?

• How long after my first meal is my next meal?
• Do I often get very hungry or low energy long before this meal?
  • If so, is there a reason why I cannot eat earlier?

  • If there is a reason, is there a way I can have a small snack to help bridge the time?

• Does the time that I eat feel like it fits comfortably and sustainably with my routine?

  • If not, what do I want to try to change?

• How long after my second meal is my evening meal?
• Do I often get very hungry or low energy long before this meal?
  • If so, is there a reason why I cannot eat earlier?
  • If there is a reason, is there a way I can have a small snack to help bridge the time?

• Does the time that I eat feel like it fits comfortably and sustainably with my routine?

  • If not, what do I want to try to change?

• Is there ever a time during the day when I feel hungry or low energy and do not have access to food?
  • How can I plan to have a food I like available for those moments?
  • If I can’t, is there a way I can adjust my eating schedule so I feel less hungry or tired during that time of day without disrupting other parts of my routine?

• Are there times I could eat more during the day to reduce nighttime cravings?
• Are there snacks I feel comfortable eating in the evening that will not disrupt my sleep schedule?

“Trying new things” doesn’t just have to be about forcing yourself to try new foods you feel an immediate aversion to. It can also be about finding backups to your most important foods in the event that they become unavailable for any reason. Here are some ways we might consider finding alternatives to our safe foods in the event that we need to.

One helpful way to test backups is to make a point of trying out an alternate brand version of your safe food every once in a while to see if it works as a suitable replacement. Whether it’s once a month or once a week or whatever time interval makes the most sense to you, taking that step is an investment in making sure safe foods are available to you even if one you like is not available for some reason. The stakes are much lower seeking out alternatives while your safe food is still readily available! 

Another way to consider potential backup alternatives to a safe food is to identify dishes made with similar ingredients. Pizzas and calzones for example are different dishes essentially comprised of the same ingredients even though they represent slightly different eating experiences.

Anyone who keeps track of their safe foods know that similar is not the same, and not every alternative option is going to work out. But giving it a try is a great way to build up our food inventory while still allowing ourselves to discard foods that are not meeting our needs.

When it comes to making food the right way, who knows about our own needs better than us? If nobody else can seem to prepare a particular safe food the right way, one helpful backup plan can be working on learning how to make it on your own! Of course it is not such a straightforward process as deciding to do it and having the exact food you want. If you are new to cooking it might take some trial and error to get it exactly the way you like it. Some safe foods are not practical to make at home, and others are elaborate enough that it might not be feasible for one individual on their own as a regular part of their schedule. But if you’ve ever thought about the possibility of making your own safe foods now is as good of a time to start the process as any!

One of the hardest parts of realizing that we suddenly do not have access to an important safe food is adjusting to the sudden, unexpected change. After all, there’s a good change we are finding out about this change at a time when we were planning on eating very soon!

If you find yourself having trouble adjusting to that type of change, a helpful backup plan can be to keep a list of the foods you know you can eat handy so you do not have to think too hard about it when the stress of such a sudden and major change might be feeling especially strong.

The following questionnaire will refer to the goals you wrote earlier in the toolkit and guide you through identifying your first steps in working on these goals.

Example answers:

• I want to avoid eating foods that make me feel sick.
  • I can start by substituting some foods I eat to try to identify which ones make my stomach feel bad.
• I want to make sure I get my full nutritional profile.
  • I can look at the nutrients I am getting out of my current diet and see if I need to add anything.
• I want to make sure I am eating enough for the physical activity I want to do.
  • I can gauge how I am feeling during physical activity and if I feel like I need more energy.
• I want to find alternatives to my safe foods just in case.
  • I can check out similar foods from other brands to see if they are as good as the one I prefer.

Example answers:

• I want to avoid eating foods that make me feel sick.
  • I have a hard time finding foods I like and that work well with my digestion.
  • Maybe the issue is I’m missing certain nutrients.
• I want to make sure I get my full nutritional profile.
  • I don’t usually track my diet well enough to calculate it.
  • I don’t want to eat to the point of discomfort.
• I want to make sure I am eating enough for the physical activity I want to do.
  • I don’t know how much I will be exerting myself day to day.
  • I don’t want to eat so much that physical activity makes me feel sick.
• I want to find alternatives to my safe foods just in case.
  • Other brands never seem to get it quite right.
  • There aren’t any other dishes similar enough to the one I want.

Example answers:

• I want to avoid eating foods that make me feel sick.
  • I can attempt to identify specific ingredients that might trigger food intolerance.
  • I can adjust the quantity of food I am eating in one sitting so I don’t feel as full.
  • I can balance some heavy foods with lighter foods to avoid stressing my digestive system.
  • I can seek out additional foods that work well with my digestive system.
• I want to make sure I get my full nutritional profile.
  • I can take a supplemental pill to get the nutrients I am not getting from my regular diet.
  • I can add foods that are rich in the nutrients I am missing to my regular diet.
  • I can eat more often to make sure I am getting a sufficient quantity of necessary nutrients.
  • I can check in on my nutritional profile if I feel like my regular diet is changing significantly.
• I want to make sure I am eating enough for the physical activity I want to do.
  • I can add some additional snacks throughout the day.
  • I can make a nutrition plan with a parent, doctor, or coach.
  • I can eat a higher proportion of carbohydrate-heavy foods.
  • I can bring some quick snacks to my physical activity in case I need them.
• I want to find alternatives to my safe foods just in case.
  • I can prepare my own version of a preferred food.
  • I can seek out a restaurant that does a good job with my preferred food.
  • I can find another type of food that has similar ingredients and qualities to my preferred food.
  • I can rely more on another safe food while I seek out new safe foods.