11 A daughter’s Journey: Lessons, Honesty, and Love

Jennifer St. Jude

She will forever be happy knowing she was loved enough that you are here fighting and advocating for her.

I WANT PARENTS and guardians of girls with autism to know that they will embark on many battles during this journey. Schools, healthcare needs, family relationships, etc., will repeatedly drag you into the advocacy arena. I want you to know that you will grow tired. You will have days when you feel like you’ve failed at everything. You will feel heartache at times watching your beautiful child suffer with her issues against the world. But while you will believe your child will only be happy when these things are all worked out, the truth is she will forever be happy knowing she was loved enough that you are here fighting and advocating for her. It’s okay to make mistakes, to fail, to do everything the opposite way from what you planned for that day. It’s okay to model saying “I’m sorry” more times than you can count. But when you end your day, end it knowing that you gave your child the most important thing she needed and longed for: your love and dedication!

I want parents and guardians to know that the fact that they are reading this and care about knowing and understanding more is evidence that they love and care deeply about their child. And that is something that matters more than anything else I say here.

Just as neurotypically developing boys and girls are different, boys and girls on the autism spectrum are also often very different. Thanks to many adult women on the spectrum who have grown up and returned to give our girls a voice, we now know that girls on the autism spectrum often manifest symptoms differently than boys do. We may “fake it” better because of our built-in social and communication advantages. So, while we may not be able to compete socially, we long to, try to, and pretend to. While we may not be able to truly express our hearts, we find ways to monologue, illustrate, and spell out our ideas and thoughts. Girls are often emotional and expressive by nature. When those pathways are interrupted by the delayed development of skills and abilities, a girl may feel a sense of quiet, and sometimes not so quiet, inner torment.

Today I am a mother of two daughters with autism, but I was also once a girl with autism myself. I deeply wanted to engage my peers and make connections as others did, but the map to them was beyond cryptic, if not altogether missing. The words I needed were buried in some language that I had not mastered at all. After I failed repeatedly and sometimes watched helplessly, I withdrew into my own private prison. I desperately studied humans and I later developed an “appropriate” monologue of responses and conversation starters. I found ways to look “normal” while inside I felt very far away from everyone. Through pattern seeking, I learned that people loved to talk about themselves and that I could be the grand listener. It served me and fooled many people into thinking I was doing well socially and had a lot of friends. But the truth was that as a teenager and young adult, I simply had a lot of pretend therapy clients. My covers were pulled off when adolescence brought on a cascade of emotions and problems for me to deal with myself. It was now my turn to seek the consolation of my peers and trusted adults. But that wasn’t possible with my missing skills. Dealing with emotions and problems in adolescence requires a connection with others and is already quite challenging for anyone. Neurotypical girls survive by “talking out” their feelings and problems to their peers and trusted adults. I could not speak about my emotions or problems to anyone. This involved expressive organized speech, something in which I was weak and completely unpracticed. I also sometimes thought in pictures and emotional snippets, and my feelings had no words. I struggled to find scripts to accomplish expressing my feelings or troubles. But because these conversations are often private and hidden from bystanders, I couldn’t watch others or copy them. Without the words to share my pain, and with no connections who could reach in and grab me, I grew silent and turned to drugs to comfort my anguished soul.

I learned the art of being an angry teen. Anger came easily for me, since meltdowns and frustration plagued me constantly, and I could now let it out. Anger required very little, if any, verbal expression. It also served to drive away those who desired to engage me in impossible conversations. Being intelligent but not fully functionally verbal, I was riddled with pride and struggled. Like all teens, I was in turmoil, but for me there was no way out. I did not see solutions or exits out of problems like others did. I did not collaborate with my peers to learn strategies to succeed. My constant struggle and heartache not only turned me to dangerous drug abuse, but I grew understandably suicidal. On the outside I appeared to be a quiet, occasionally explosive, unreasonable teen. I was “normal” in the eyes of adult outsiders expecting to see this in adolescents. Every passing year and my growing intelligence made it that much harder to confess to anyone the true reason for my strife and inner turmoil.

As I became an adult, I very slowly and painfully pieced together ways of coping. In the beginning I turned to addictions that only band-aided and then compounded my issues. After finding structure and support from twelve-step groups, I then began the difficult journey back to a connection with the world. I worked with many therapists, all of whom focused on verbal discussion to resolve issues. I tried really hard but couldn’t use this method to get to anything. I was the hardest working person, getting nowhere, who I knew. The older I got, the more I was able to hide. I was driven into my own world. On the outside, I learned to monologue with comedy. People didn’t expect me to have verbal communication skills when I was being funny and entertaining them. I could monologue my stories and experiences and others would just laugh or listen. I continued to gravitate to troubled souls, somewhat because I understood them and somewhat because they appreciated a listener who didn’t talk. For years, I felt a bit like the Wizard in The Wizard of Oz. I was a frightened, trapped soul who used a big scary projection screen to scare off people in order to not get caught being vulnerable, lost, me. I could never ask for help because I didn’t know what was wrong, nor did I know what help I even needed to ask for.

This continued for what felt like a lifetime. But it did have an end. In 2010, after discovering that I shared my daughters’ autistic traits, I decided to get help. As my daughters’ problems mounted and I could relate but not help them, I knew that I needed to do something fast. Getting my own help was the only chance my children had for me to be able to help them as well. I had to learn how to navigate me out of this mess if I was going to help them. They were beginning to cope and navigate the world better than I was, and encounter problems that I could not assist them with, because I had not learned those skills myself. I was so fortunate to stumble on the Autism Women’s Network (now the Autistic Women & Nonbinary Network). There, on their website, my world began to grow, and more knowledge poured into me than I ever dreamed possible. I found hope again and was encouraged to find others just like me who had found their way to the world.

Eventually, I made an appointment and was evaluated for autism by the only therapist I knew of in Los Angeles who worked with adults. After being diagnosed with autism by a licensed clinical social worker, I began working in therapy with her. My world blew open and began to transform. I learned about my diagnosis and how to cope with it from my therapist, as well as attending a group for adult women with autism. I found meet-ups for adults with autism and an amazing community on Facebook, the Autism Discussion Page, which brilliantly illustrated “what to do now.”1 After years of being improperly diagnosed, I finally began to get the help and treatment I needed.

My anxiety issues were finally correctly diagnosed as sensory processing disorder, an issue that often co-occurs with autism. I started occupational therapy for my sensory processing disorder issues that were, by then, off the charts in intensity and crippling my life.

I could go on and list all my experiences, but regardless, every girl is different, and it might not always look for her as it looked for me. So, on the following pages are some basics that you need to know about your girl on the spectrum. And remember, when you feel completely stumped about an issue with your children, ask them. Let’s face it, most people know themselves the best. Often, my daughters’ ideas are brilliant and fresh. Consult the most experienced expert on your child; consult her.

Common Issues and Needs for Our Girls on the Autism Spectrum
ISSUES	NEEDS
Affection and Safe Contact	Our girls need the same connections to others, but sometimes need it differently. Explore ways of affectionately connecting with her (e.g., allow her to hug you, share a blanket, lean up against you, or just be in the same room as you). Children on the spectrum can sometimes be hypersexual. Teach her safe touch and rules for herself and others.
Asking for Help	Will often not ask for help, not get their needs met, or be able to navigate initiating a conversation to ask for help. Need scripts, phrases, and words that help them get their needs met and opportunities to learn to create their own scripts with help.
Boundaries	Can be an issue because she has not learned them easily via “non-verbal cues.” She also might not notice others’ poor boundaries. Give practical and tangible examples of boundaries (e.g., teach her that she should always stand at arm’s length and ask people permission before touching them). Have good boundaries with her.
Cause and Effect	People with Autism don’t always see relationships between things. Help her connect her behavior to the reactions of others and others’ behavior to how it made her feel. When something positive happens, help her see the events that made it possible. When negative events reoccur, try and outline the possible causes (if any) so that she understands the connection.
Comfort	Getting comfort can be hard for our children. It is a social skill. She will need a “script” and a plan. Teach her how to ask for comfort and help her find ways that feel like comfort to her. Calming and grounding techniques are different for our kids. Explore her unique sensory needs and ways of comfort that are positive (e.g., no self-harm is acceptable).
Creativity	Allow your child to find her own creative way. Try lots of things and remind her that sometimes you have to find what you don’t like to discover what you love.
Emotions	Girls are emotional beings and emotions can be very difficult, especially when girls are diagnosed with Autism. Adolescent girls with Autism struggle more with the world of emotions and are sensitive beings. Emotions don’t always make sense or have the right timing. Remind them that it won’t always feel this bad and that they are still learning. Tell them concrete stories of your own or those of other women with Autism so they don’t feel so alone. Girls need to be taught the words for what they are feeling inside. Teach her what she’s feeling, then teach her how to express it (e.g., You seem angry, do you feel angry or mad? It’s okay to tell me, “I feel really angry.” If I know you are feeling angry, I can take time to listen to you and or give you the space you need and not make things worse.). Girls on the spectrum need to learn not only how to use words, but that they matter and make a difference in how others will treat them and experience them.
Empathy	Individuals with Autism are empathetic. However, “theory of mind” issues cause them to not understand what you are feeling to be able to respond. Once they know what you are feeling they then struggle to know how to respond appropriately. This often gets misunderstood as a “lack of empathy.” Teach them how to ask people what they are feeling. Teach them how to respond to the different needs of others (e.g., “When someone says they are sick, ask them if they need anything and tell them you hope they feel better.”).
Expressive and Receptive Speech	Can hear okay but struggle with understanding what they hear and expressing thoughts and feelings. Expressive: need to be taught concretely how to say things in a way that works and how to interpret and understand what others are saying. Receptive: teach them to ask people to speak more slowly. Teach them to check for understanding in both directions.
Friends, Belonging, and Connections	Our girls desire to have friends, belong, and have connections (that feel good and aren’t painful). Need support and help in making friends by setting up play dates and educating other parents and their friends about what they might struggle with and how things can be better. Need help finding a place where they feel like they belong and fit. An Autism girls group, a meet-up, supportive Girl Scouts, a religious group, etc.
Frustration	Frustration can get in the way of function. Emotions short-circuit the logical part of their brain. Girls feel emotions intensely and need calming strategies. Make a list of soothing activities with your girl. If the list is short, then make a list of things to try and experiment with to see if she likes them. Always pair a difficult or new task with a preferred one that you know she likes.
Literal	Individuals on the Autism spectrum are very literal. Need information presented concretely. Speak literally and not figuratively for the best understanding. Help her see the message and not just the literal words.
Maturity	Girls mature faster and feel grown up in many areas while other areas remain very delayed. However, remember that your girl needs to be respected and consulted on matters that affect her. Teaching her how to handle difficult situations will help her mature.
Meltdowns	Meltdowns take on a different, more acceptable look as they grow older. They get moody, irritable, or angry. While these look like typical teen behaviors, it could be signs of early meltdown. Get a plan for this BEFOREit happens. Most importantly, remain calm yourself. When a human is in a state of meltdown they can’t process information as easily. Quietly and calmly remind her she is safe. Keep words small and slow.
Nurturing	Teach them self-nurturing by showing them and/or doing things with them (e.g., a facial, reading, warm baths, yoga, shopping, movies, cuddling, writing in a diary, art, projects, music, etc.). Teach them how to show caring for others with words and actions.
Obsessive Compulsive Disorder (OCD) and High Anxiety	Help ease her anxiety and OCD issues by consoling her worries and having her keep a journal of fears that she can write down answers you give her and helpful tips for feeling better. Creating a “plan” can really help ease anxiety. It can be a verbal list of activities for the day or a group of pictures like a comic layout.
Organization	Children with autism struggle with executive function skills. It makes it very difficult to do things in order and sometimes it’s difficult to even get started. Help your child by teaching her organizational skills (e.g., using a calendar, setting reminders in her phone, making lists and checking-off items, even a picture schedule if it helps).
Practical	Tasks need to make sense. Need to understand when you ask them to do things different and how it will help. They can get stuck on the “Why?” Teach her that she may not see the reasons for a task but there are almost always reasons. Teach her acceptable ways to ask for explanations that don’t get misunderstood as complaining (e.g., “I’m not complaining, I just need to understand why you need me to do this task. It’s just how my brain works.”).
Purpose	Our girls desire to have purpose and to be of service in some way and have meaning in their lives. Need to have a job or skill they do well so that they can feel good about themselves. Autism isn’t all deficits!
Reasoning Skills	Difficulty understanding the process of things. Girls on the spectrum are very concrete and very “here and now” in their thinking. Help them to see the process of things by narrating things you do and why (e.g., I like to put my clothes out for the morning so that I don’t have to think about it in the morning when I’m tired).
Responsibility	Sometimes our children struggle so much we don’t want to burden them with more responsibility, but contributing (however small) increases self-esteem. Give your child a chore and help them succeed. Use charts, rewards, phone reminders.
Safety	Teach her specific words like “no” and “stop,” and demonstrate them with her so she really understands their use. Show her by example by always respecting a girl’s “no” and teach her that her “no” is important by honoring her words. Give her scripts to use in emergency situations and practice them. Create cards that speak for her in case she can’t find the words. Role-play different emergency situations and have a solid plan. Keep safety plans and phone numbers of safe people in one place and make sure she can use them. Teach her how to dial 911 in an emergency and explain the reasons to call.
Seeing the “Big Picture”	Individuals on the spectrum have difficulty seeing the larger view of things and tend to focus on the immediate details in front of them. This makes it difficult to plan or work toward things. Creativity will collide with the Autistic rigid practical mind (e.g., a girl on the spectrum might get caught between wanting to draw but not see the purpose in it). Teach her that the purpose is in the moment and that it strengthens her brain and calms it. Help her to see the big picture by constantly stretching beyond her literal immediate moment of now (e.g., “I hang my clothes up right away so they don’t get wrinkles and have to be ironed later.”).
Sensitive and Empathic Beings	Girls on the spectrum are often sensitive and empathic to other people’s emotions. Help her understand feelings of her own and interpret the feelings of others.
Sensory Processing Issues and Disorder	Seek help from an occupational therapist for sensory issues. They get overwhelmed with touch and other senses and experience a great deal of what seems to be anxiety, but it might be sensory processing issues. Teach her concrete ways and tools that will help her sensory system feel organized (e.g., stretching, deep-pressure massage, meditation, wrapping up in a stretchy blanket, etc.). Get help from an occupational therapist. Try some activities known to help organize the brain and nervous system, such as yoga, gymnastics, horseback riding, dance, volleyball, hiking, swimming, trampoline, stretching, working out, meditation, etc.
Social Cues	Show up even as your child is seeming to be selfish or hard to get along with. She misses her friends’ social cues that would normally tell her how to communicate in that group. She will compensate by either becoming angry to deflect her hurt or by withdrawing to pull away from it altogether. Help your girl with social cues by spelling out your own reactions and feelings to interactions. When presented with problems, give your child options of possible different scenarios and examples of how she can react for greater success. Role playing can be very helpful and is a creative way to practice.
Talents and Skills	Remember every girl on the spectrum has a secret skill or ability. Natural talents and skills are often very present amidst the deficits of Autism. Find ways to nurture these gifts to offset the challenges she will face. Help her find it by really paying attention to what she CAN do and not so much what she can’t do. Show her examples of people with a skill and/or talent she likes or is good at, and then teach her how that person took classes or learned more. Girls on the spectrum will often think that people are born that way and actually feel bad when their amazing talent isn’t as good as professionals they encounter.
Theory of Mind Issues	The inability to know what others are thinking and feeling will cause her to seem selfish and unreasonable when others are experiencing issues and her demands on them don’t adjust. “Theory of mind” prevents her from understanding what others are thinking and going through. Give her lots of opportunities to understand by sharing your own thoughts about things out loud (e.g., “I’m not talking to you right now because I have a headache and it hurts to talk. When I feel better, we can talk about how your day was.”). Give her a possible idea of what friends may be thinking (e.g., “Maybe your friend is just tired today. You know how you don’t feel like talking to people when you are tired?”).
Valued and Appreciated	Our girls desire to be valued and appreciated. Need to know they are loved and important despite the difficult job they challenge you with. Write them notes that express how much they matter to you.
Verbal Expression vs. Monologues	Girls on the spectrum learn to monologue but struggle to verbally express their authentic self. Use alternative ways to communicate (e.g., a notepad, diary, assisted communication device). Remember to give them a script for this when they are overwhelmed (e.g., “Can I have my notepad?” etc.).

Final thoughts:

Scripts, scripts, and more scripts. Teach your girl how to get what she needs and wants with words that work. Once she masters that, show her how to say things differently with different people so she understands the depth of language.

Girls can often be very emotional and sensing individuals; add autism and you can have a super emotional and super sensing individual. The best way to interact with this type of soul is with honesty and love. You can’t go too wrong if you approach all issues this way. Help your child feel supported by reminding her that you will figure out life together and that she is not alone. Consciously remain the person your child can turn to, so that in times of trouble she will always have an ally in you. If you make mistakes, and you will, apologize genuinely and talk about ways to do things differently next time. If things get heated or you see signs of distress, write or draw instead of speaking words. Like any parent or guardian of a girl, you will have your own feelings of frustration and defeat. Communicate them so she knows she is not alone with these experiences.

Love really is the great healer.