Autism Awareness Month Week 3: Coping Strategies for Parents of Kids on the Spectrum
A day in the life of a parent of an autistic child can run the gamut from love to compassion, to heated discussion, to begging, to crying, to screaming and then shame and frustration. And truth be told, all of this can happen in within one hour some days… believe me, I’ve been there with my son when he was younger. I have felt this exhaustion and frustration on a personal level.
Parents can find themselves walking on eggshells, not knowing what trigger may happen to prompt a meltdown or screaming match from their child and assisting the child with a sensory overload. They may need to drive their child to various doctor appointments, therapy appointments and find themselves advocating for their child’s needs on an hourly basis. No two days are the same in a family of child with autism.
Though families and of autistic children will face many unique challenges, they do not need to live in the fear of being doomed to a life of overwhelming stress. I am going to go over the different types of caregiver stress as well as offer some coping strategies to help parents experience less stress and be able to handle the daily regime that goes along with their child’s diagnosis.
Types of stress caregivers will experience:
Physical Stress: Parents who are chronically stressed about their child, situation and diagnosis have been found to have an increase in cardiovascular issues, lower immune system and higher digestive disorders. One study found that their levels of cortisol, the stress hormone, was also elevated which can have an adverse effect on their sleep, causing insomnia and lower cognitive functioning.
Psychological Stress: The constant caregiving and meeting the needs of a child with autism, ADD/ADHD or other types of neurological conditions can increase the risk of depression, anxiety and eating disorders and addictions. The key is for parents to develop coping strategies the take care of themselves, disengage from caring for their child for a small bit of time every day.
Financial Stress: Research has shown that parents who are caring for children on the spectrum may earn less money, have a hard time finding flexible work and work fewer hours than parents with neurotypical children. They may also face additional expenses including; weekly therapy, medical expenses, transportation to therapy sessions, adequate child care with someone licensed to work with autistic children and this can put a huge financial burden on an already stressed out family. Some parents are at risk for losing their jobs if they are frequently called to pick up their child from school or daycare when a meltdown or incident occurs.
Social Stress: That meltdown you witness in a grocery store is most likely due to an over stimulated child who is on the spectrum. Unfortunately, the general public is uneducated about autism spectrum disorder and their glares or silent “discipline that child already” thoughts do not help a parent who is already at their wits end because they just want to get through this shopping list quickly and get home. Placing blame or shame on a parent when they are clearly having a hard time does not help the situation. This can create the stigma that these parents are on their own. No one else has to deal with this and thus they isolate themselves from public gatherings, family gatherings or even getting together with friends. Many of these families experience marital stress as well which only creates more issues.
So, what can you do if you are a parent of a child on the autism spectrum disorder?
1. Make sure you are eating a nutrient dense diet. The best thing you can do for yourself and your family is to incorporate more fruits, vegetables and lean protein into your diet. Not only will it boost your energy, but it will boost your mood. When you can practice healthy nutrition you not only provide your cells with the proper fuel to make you move and groove, you also feed your brain and neurotransmitters the fuel they need to keep your central nervous system calm and centered. Knowing that your elevated cortisol levels will make you crave those complex carbohydrates (mac and cheese, cookies and chips is a great step in making some lifetime changes in your eating habits.
You will want to nourish your mind and body with foods that really do make you feel good. Instead of that cookie, have an apple with a nut or seed butter. Have celery with cream cheese or a yogurt. The key is to learn how your body reacts to nutrient dense foods and how it reacts to “comfort foods” that you choose. Remember, this is for you, not for your picky eater child. Focus on you first, we will get to your child later. A lot of times, if the parent is a good model for the child, the child will follow suit.
There is a very distinct connection between your brain and your gut. So much so, that the gut is known as the “second brain”. It can link anxiety to stomach issues and stomach issues can cause more anxiety. Your gastrointestinal tract is very sensitive to emotion. Feelings such as sadness, elation, anxiety and anger can trigger symptoms in the gut. If you see these emotions in your child, look to heal their gut.
The sympathetic nervous system will trigger that “fight or flight” stress response in our body when something traumatic happens.
The parasympathetic nervous system calms the body after the traumatic event passes.
Both of these nervous systems interact with another element of the autonomic nervous system- the enteric nervous system, which helps regulate digestion.
The enteric nervous systems is referred to as the “second brain” because it depends on the same types of neurons and neurotransmitters that are found in the central nervous system (brain and spinal cord).
The enteric nervous system uses neurotransmitters like serotonin to communicate with and interact with the central nervous system.
This alliance between the “brain-gut” is what intrigues researchers in better understanding how psychological and social stressors may cause digestive problems. When someone becomes stressed enough to trigger that fight or flight response, digestion will slow and, in some events, even stop so that the body will divert all energy to escaping that “bear.”
The brain has a direct effect on the stomach and the intestines. Did you know that just thinking about eating will release the stomach’s digestive juices before food gets there? It’s true.
The link can work both ways. If you have a troubled intestine or stomach it can send signals to the brain. Your stomach or intestinal distress can be the cause of anxiety, stress or depression and it can be the product of those as well.
If your body is constantly revved in that “fight or flight” mode, you will have inflammation in your gut.
Psychology will bond with physical factors to cause inflammation in the gut and a variety of bowel symptoms; Celiac, GERD, Irritable Bowel etc. Psychosocial factors can also influence the structure of your gut too. Stress, depression or other psychological issues will affect the proper working of your GI tract.
The best way to handle this is to turn off that “flight or fight” response and to allow your gut to heal. Heartburn, acid reflux, abdominal cramps and loose stools can all be linked to your stress levels.
One of the best therapeutic stress reducing modalities is to adopt a nutrient dense diet. This means choosing vegetables, fruits, whole grains, beans nuts and seeds and lean protein prepared with little or no saturated fats, added sugars and sodium. When you can consciously choose more nutrient dense foods you will reap the rewards of receiving all the beneficial nutrients your body and mind needs without consuming too many calories.
A proper diet can counterbalance the impact of stress by strengthening the immune system, stabilizing moods, and reducing blood pressure. By eating a variety of foods you ensure that you consume all of the forty to sixty nutrients you need to stay healthy. These include vitamins, minerals, amino acids, essential fatty acids, and energy from carbohydrates, protein, and fat.
While most foods contain more than one nutrient, no single food provides adequate amounts of all nutrients, which is why it is important to have a variety in your daily diet. Add in a rainbow of fruits and vegetables. We will go into examples in a bit.
When you are going through a period of stress, it is important to get all the essential nutrients, especially those high in B vitamins, which affect the nervous system. Calcium is also needed to counteract the lactic acid your tense muscles produce. Your body will not be equipped to handle stress effectively if you are lacking these key nutrients. Avoid trans-fat, high fructose corn syrup, partially hydrogenated oils, added color or preservatives.
Here are the 4 nutrients you need to make sure you are boosting in your diet:
Iron, Magnesium, B Vitamins and Vitamin C
Iron is an extremely important mineral as you need it to make oxygen-carrying red blood cells. Unfortunately, many of us are low in iron and while diet is a factor, so is the ability to absorb and retain the iron. There are two forms of iron; heme iron and non-heme iron. Red meat has a combination of the two forms while plant-based foods are rich only in non-heme iron. This can become problematic when people cannot digest red meat or choose to be vegetarian or vegan.
Non-heme iron isn’t always well absorbed by your body and when stress hits, it can be exacerbated which can lead to low levels of iron.
Women are more vulnerable as their demand for iron is higher due to menstruation and menopause. If you feel that your stress could be eating away at your iron levels, you will want to add more iron-rich foods to your diet.
· Pumpkin seeds
The daily intake could look like this:
· 1 cup white beans
· 3 oz dark raw cacoa 70%
· ½ cup boiled lentils
· ½ cup spinach
· ½ cup kidney beans
· ½ cup chickpeas
· ½ cup Tofu
· 3 ounces bottom round beef
· 3 ounces roasted chicken
· 18 cashews
· 3 ounces tuna in water
· 49 Pistachios
· ½ cup broccoli
· 1 hard boiled egg
· ¼ cup raisins
Magnesium is one of the most pivotal nutrients for your body. So much so, that it is involved in over 300 chemical processes and reactions.
It helps support your muscles and joints. It creates protein synthesis. Blood glucose control. Blood pressure regulation. It contributes to the structural development of bone. It is required for the synthesis of DNA and RNA.
It creates new enzymes and can prevent stress by increasing your GABA levels. GABA is a neurotransmitter that helps reduce feelings of fear and anxiety. Unfortunately, when we are stressed, this nutrient is depleted.
Magnesium is one of the minerals that your body tries to utilize during stressful moments to support muscles and joints and provide you with energy. However, if it isn’t utilized enough it is excreted through your urine which can create more problems and one of the main symptoms is low mood.
The great news is that sources of magnesium are easy to find and add to your diet.
Sources of Magnesium
The best sources of magnesium are found in green leafy vegetables like spinach and kale as well as bananas, figs, raspberries, legumes, nuts, seeds and whole grains and even dark chocolate.
The dietary allowance could look like this:
· 1ounce Pumpkin seeds is 156 mg
· 1 ounce Chia seeds is 111mg
· 1 ounce almonds is 80mg
· ½ cup spinach is 78mg
· 1 ounce cashews is 74mg
· 1cup oatmeal is 36mg
· ½ cup Kidney beans 35mg
· 3 ounces Salmon 26mg
· 1 cup milk 25mg
· ½ cup Avocado 22mg
B Vitamins refers to a range of B complex vitamins that perform a variety of roles for your body, but most notably they support your nervous system, helping your body absorb the energy from your food properly.
They help produce the feel good neurotransmitters like serotonin which boosts your mood and supports your body through stressful situations.
It also plays a role in cognitive development.
Unfortunately, B Vitamins are water-soluble, meaning our body won’t store them for a long period of time. This is why it is so important to have a diet rich in B vitamins.
Chronic stress will deplete your stores of certain B vitamins. This can create a vicious cycle and can contribute to deficiencies in B12, which is difficult to get from diet alone. Especially if you are vegan or vegetarian.
If you have a stressful life, B vitamins should be a priority. You should boost your body with added whole grain foods, sunflower seeds, almonds, avocados, bananas and sweet potatoes, but also consider taking a good vitamin B12 supplement.
B Vitamin Deficiency Symptoms:
· Microcytic Anemia
· Abnormal brain activity on an EEG
· Dermatitis with cheilitis (scaling on the lips and cracks at the corners of the mouth)
· Swollen tongue
· Depression and confusion
· Weakened immune function
Vitamin B6 deficiency can result from malabsorption syndromes such as:
· Celiac disease, Crohn’s disease and ulcerative colitis.
· Some anti-epileptic drugs can also lead to deficiency over time.
· Those with rheumatoid arthritis often have low vitamin B6 levels.
· Scientists think that certain B vitamins (folic acid, vitamin B12 and B6) could reduce cardiovascular disease.
Interactions with Medications
Vitamin B6 can interact with certain medications and some medications could affect vitamin B6 levels. Check with your GP if you are on a medication that could affect your vitamin B6 levels.
Sources of Vitamin B
There are so many varieties of fruits, vegetables and whole grains that are good sources of B6. As well as proteins like lean meats, eggs, seafood, beans, peas, lentils, nuts, seeds and soy products.
The dietary allowance could look like this:
· 1 cup chickpeas 1.1 mg
· 3 ounces tuna steak .9mg
· 3 ounces sockeye salmon .6mg
· 3 ounces roasted chicken breast .5mg
· 3 ounces turkey meat .4mg
· 3 ounces ground beef .3mg
· 1 cup cottage cheese .2mg
· 1 ounce mixed nuts .1mg
· ½ cup raisins .1mg
· ½ cup spinach .1mg
· ½ cup tofu .1mg
· 1 cup watermelon .1mg
Vitamin C is also a multitalented nutrient that supports a variety of functions throughout your body. It acts as an antioxidant, protecting cells from the damage caused by free radicals. (cigarette smoke, air pollution, ultraviolet light from the sun). Assists in the production of collagen to support blood vessels and arteries and help the body heal. Vitamin C improves the absorption of iron from plant-based foods. Vitamin C helps the immune system work properly to protect the body from disease. Vitamin C can play a role in reducing your levels of cortisol.
Stress also depletes your vitamin C levels. Adrenal glands need vitamin C to produce stress hormones in the first place. When they are working overtime, stress can also push you toward habits that drain your vitamin C levels.
Vitamin C is also water-soluble which means that your body won’t store it for very long, which is why you need to boost your food and use supplements.
How much vitamin C do I need?
If you smoke, add 35 mg to the above values to calculate your total daily recommended amount.
Sources of Vitamin C
Many fruits and vegetables are the best sources of vitamin C. By eating a variety of these foods you will boost your immune system as well as your mood system.
· Citrus fruits: oranges, grapefruit and their juices.
· Red and green bell peppers
· Kiwifruit, strawberries, cantaloupe, blueberries
· Broccoli, baked potatoes, tomatoes
Best if eaten raw as cooking or prolonged storage can reduce their vitamin C levels.
Check with your GP about supplements as some may interact with medicines that you take.
Eat a variety of foods so that you consume all of the nutrients you need to stay healthy. Including all the vitamins and minerals as well as amino acids from proteins, essential fatty acids from vegetable oil and animal fat and energy from carbohydrates, protein and fat.
Maintain a healthy diet of whole and unprocessed foods. Processed foods include any food that has been cooked, canned, frozen, packaged or changed in nutritional composition. With that said, processed foods fall on a spectrum of minimally to heavily processed:
Minimally processed foods:
Frozen fruit or vegetables
Added flavor, sweeteners, spices, colors or preservatives
Frozen meals; pizza, microwaveable dinners
Aim to do more food prep and cooking at home to minimize your intake of processed food. Create meal plans around whole foods including more vegetables and protein and smaller portions of complex carbohydrates. Include whole grains, beans, nuts and seeds. Create quick grab and go snacks for you and your family. Hard boiled eggs, mini carrots and dip, apples and peanut butter are great choices to keep on hand and in eyesight.
Look for hidden sugar and sodium by reading the labels of everything. Ketchup, pasta sauces and salad dressings all have hidden sugars that you wouldn’t really think of. It can be on the ingredient list labeled as sugar, maltose, brown sugar, corn syrup, cane sugar, honey and fruit juice concentrate. Processed foods can contain higher amounts of sugar and sodium, so be careful and only eat in moderation.
Why is sugar important to know about?
Sugar has no essential nutrients and only tricks your brain into thinking something is good for you. It can give you a short-term boost of energy but exhausts your adrenal glands.
When your adrenal glands are exhausted you can experience irritability, poor concentration and depression. High sugar consumption also puts a severe load on your pancreas. Half of patients who have pancreatic issues have been diagnosed with symptoms of depression and anxiety. Keep your blood sugar consistent by using the right amount of protein and natural fruit as your “sweet treat” for the day.
2. Focus on your reality. Here is the bitter truth… you will need to grieve for the future you thought your child would have before you received their diagnosis. This is an important step in order for you to move forward without worry and with little stress. The minute I took the time to go through the grieving process, I felt so much better and more empowered for my son and our family. It is so easy for parents of children on the spectrum to increase their anxiety while focusing on their child’s development or under development. Parents of these amazing children are at higher risk for excessive worrying about their future. This not only puts stress on your mind, but also on your body and soul and whether you realize it or not, your child picks up on your energy and it could trigger a meltdown or reaction from them and you didn’t even realize that you caused it.
Instead of worrying about the future, I want you to take stock in what you have now, today, in this moment. Instead of worrying about the “what if’s” focus on “What is my responsibility to my child today and to myself?”
Something that helped me and my son is when we started a daily gratitude list. He was 6 when we started and instead of writing his gratitudes he would either tell me what they were or would draw a picture. You write down at least three things you are grateful for every day and if you can, also write down one thing you accomplished that day. This simple act brings you back to the present moment and has you appreciate everything that you HAVE and not worrying about what you don’t have. The accomplishment instills a sense of self-confidence, self-esteem and self-worth. It could be as easy as they made their bed that day, or they put their dish in the sink, or they got dressed on their own. Celebrate these moments and share in the joy.
Another key tip is for parents is that it is essential to find reprieve outside of work. Work is one of the few places parents of children with autism can find a break from caring for their child. Unfortunately, it isn’t enough to keep stress levels low. Ideally, parents should create time outside of work to focus on their emotional, mental and physical health. Find a gym or recreation center on the way to or from work to stop off and ride a stationary bike, swim, run on the treadmill or take a yoga or Pilates class to burn off steam and boost your immunity. Join a book club where you either meet online or in person once a week. Take a daily walk with a neighbor or a friend. Even if that means finding someone to stay with them for an hour or two a couple of days a week. It is important for your child to adjust to another adult (after thorough vetting by the parent) as well as it gives you the time to decompress. Find a MeetUp group in your area of parents of children with autism spectrum disorder. If there isn’t one, create it… you are not the only parent looking for support and help. Team up with another family and create “play dates” with the kids and the parents. Reciprocate watching each other’s kids for a few hours to help give each other some reprieve.
Create and educate your village. My son is graduating high school this year and I have always said, “The village that has helped us get this far has been amazing and I am so grateful for everyone in it.” Parents of children with autism who have a strong support system are less likely to experience stress than those who haven’t created their village. Family members, close friends, neighbors and schoolmates may struggle to understand how to help, so you may need to do some educating. The other thing you can do is give them specific tasks that they could help with; picking up your groceries, dropping off the dog at the vet, picking up one child from school while you are bringing the other to their therapy session. Here is a great link to use: https://childmind.org/article/sharing-an-autism-diagnosis-with-family-and-friends/. Don’t forget disability organizations, schools, community organizations (ABA) and places of worship as part of your village too. They are just as important and could offer some other advice that you didn’t even think of.
3. Make sure you are making sleep a priority. A sleep deprived parent cannot function, nor can they provide adequate care to their family. Make sure you are turning off all electronics 1-2 hours before going to sleep. The blue light from the electronics is wreaking havoc on your circadian rhythm and makes it hard for you to produce melatonin, which is needed to not only fall asleep, but it also balances your mood.
Create a bedtime routine that includes down time of either, hot bath or shower, reading a book to yourself or to your child, light yoga stretches like legs up the wall, guided meditation, Delta wave music or progressive relaxation technique https://www.uofmhealth.org/health-library/uz2225.
Stop drinking caffeine by 2pm as it can stay in your system for up to six hours and could be causing you to not be able to calm down and go to sleep. Instead of grabbing for an afternoon latté, opt for caffeine free Chamomille or peppermint tea for its calming effect or a Matcha tea for a kick of energy without the high caffeine levels.
Invest in a good mattress, amazing sheets and comforter, comfy pillows and darkening curtains. Make your bedroom a sanctuary. Remove all pictures of your kids, laundry, to-do lists and electronics. Create a space you can escape to when you need it. Use this space for a quick “mommy time-out” or a quick 15-minute power nap.
4. Seek out professional help. Along with the village it will take to help your child, you will also need support. Find a therapist who can help you walk through the good and bad days as a parent of a child on the spectrum. If regular therapy or counseling isn’t an option, there are other services you can use to help. Ask your primary care if they have anyone they can refer you to within your insurance group. Disability and autism organizations can also connect you with support groups in your area (https://www.uofmhealth.org/health-library/uz2225). Support groups can help you feel supported, heard and that you are not alone in the day to day struggles. Facebook groups are another way to connect and ask for support.
If you are a parent or caregiver to a child with autism and would like to reduce your overall level of stress, start by asking yourself the following questions:
1. What are some small changes that I can make so I care for my mind and body every day?
2. What are some unhealthy ways that I have been coping with my stress that I need to remove from my routine?
3. Where are there moments in my day that I can slow down and focus on myself?
4. What hypothetical worries about my child’s diagnosis that get in the way of me living in the present moment?
5. Are there any daily tasks that I can delegate to lower my stress?
6. Whom in my support system have I been quick to overlook when we need help?
7. What community support systems have I not researched yet that could help us?
8. What low-cost or free professional help is in my community that could help us?
Pay attention to how you are currently managing your stress and consider how you could make some simple changes to bring more healthier and effective options to your life. Take the time to engage in these precious moments of time. Savor your cup of coffee while daydreaming out the window. Eat your lunch outside as you watch the squirrels chase each other. Read a chapter in a murder mystery. Color in an adult coloring book. Do a quick online exercise class.
When you create coping strategies for yourself and use them daily you will see a decrease in your level of stress and you should see an increase in your levels of patience and tolerance. This will make a significant change in your life and your child’s life.