The road to learning my daughters’ autism diagnosis was a long and gradual one. The journey was emotional and full of ups and downs. In this post, I want to share with you lessons learned in hopes of offering help and hope as you go through your own journey.
Little by little over the course of the first 5 years of my daughter’s life symptoms began presenting themselves. This is often the case when dealing with High Functioning (Level 1) Autism Spectrum Disorder (ASD). Since it is such a spectrum, kids on the high functioning end of the spectrum often don’t get picked up till later. Especially if they are girls. Looking back, there were signs as early as birth. Extreme difficulty learning to nurse and colic were among the earliest signs (not every baby who struggles with these issues is on the spectrum, but they are learning there is a correlation between the two).
At 11 weeks old the colic passed, and she slept through the night. I worked hard to get her on a good routine, and she slept and napped great. But whenever we slept somewhere else – at my mom’s for example; or if someone else put her to bed – even if it was my husband – she would scream all night long. She never tired herself out. She was in a complete panic. Even if I spent the night on the floor next to her patting her back, or brought her into bed with me. The change of place or routine was the problem. Even as a baby we saw the hallmark rigidity that accompanies ASD.
She kept meeting her physical developmental milestones, albeit on the latter end of the “normal range,” until about 18 months old. In other areas, she was well advanced. By 11 months we could ask her to point to the numbers 1 through 5 and she could recognize them. Her vocabulary and communication skills were actually very advanced; she was speaking in complete sentences and having conversations with us well before her 2nd birthday. Where the speech delay showed itself was in her formation of the words. It wasn’t the typical, age-appropriate way a toddler mispronounces words. Words were slurred together as if she couldn’t quite figure out how to form them. This, combined with the fact that she did not walk until she was 18 months old, prompted us to ask her pediatrician for a referral to early intervention at her 2 year check up.
We began with a speech evaluation. She qualified for speech therapy and was referred for an Occupational Therapy (OT) evaluation. Some of the major concerns that led to the OT evaluation were the pocketing of food in her cheeks and the delays in motor skills. It was determined during that evaluation that she had sensory processing problems, a motor-planning delay (which means the part of her brain that organizes a task for her body to perform was not functioning properly). The OT who evaluated her also noticed low muscle tone and weakness and referred us for a Physical Therapy (PT) evaluation. The PT confirmed the low muscle tone and she qualified for PT as well.
So from ages 2-4, my daughter received speech therapy, OT and PT through early intervention and then through CPSE (Committee for Preschool Special Education) in our school district. We knew her issues were spectrum-related at this point; but none seemed severe enough to diagnose her with Autism.
When my daughter was 4 years old she began attending our district’s UPK program. For the first time she was away from me and placed in an environment with a teacher, an assistant and 18 other kids. Her world expanded quite a bit at that point, and in that expansion it became clear that her needs were more severe than we thought. She spent much of her time in pre-k lost in her own world. She would often go into the closet to hang up her coat and never come out because something would catch her eye and distract her. She would go into the bathroom and not come out because of a deep conversation she was having with an imaginary ant on the floor. She often behaved like an animal – a dog, a cat, or a horse. If you asked her a question she would reply in the form of a “woof” or a “meow” instead of with her words.
At the same time that we were seeing these delays, she was continuing to show us that she was incredibly smart. By age 3 she was reading – and not just sounding out the word “cat.” I mean she was READING. We could open the Bible to any random Psalm and she read it with rhythm and flow in her voice as if she had always been reading. She would often come up to me as a 4-year-old and say things like, “Mommy, one day can we go to the north pole and see the Aurora Borealis?” (For those of you adults who don’t know, those are the Northern Lights.) She has always had an incredible vocabulary.
As we began to see the growing number of delays, the distraction, and the seemingly savant-like skills, it became clear that she was on the spectrum. The school was refusing her the supports she would need to succeed in kindergarten. A friend who is a speech pathologist in the public school system told me that she would need an official diagnosis to receive a classification and services. At that point I spoke with our pediatrician and she referred us to a pediatric neurologist. (For any of you who suspect anything could be wrong with your kids – I strongly recommend that you make seeing a pediatric neurologist and/or a developmental pediatrician your first stop! This will save you so much time and trouble with the school district!)
Upon our visit to the pediatric neurologist, I remember emotionally preparing myself. In fact, not only was I preparing myself to receive an Autism diagnosis; I was actually hoping it would be so. I knew, whatever they labeled it, my daughter needed help. The Autism diagnosis would open up a whole new world of resources and provide her with necessary legal protection. So that was my thinking, going into the appointment. At least it was on the logical side of my brain. But even with such preparation, when I heard the doctor say the words “Autism Spectrum Disorder;” when it was official that my daughter had this condition; I felt like my heart stopped. I was sick to my stomach and consumed with worry and questions and fears. While I was logically prepared, emotionally I was not.
I worried if my daughter would be ok. Would she be able to sustain meaningful friendships? get married? have a career? be independent? How would others react to the news? Aside from all of those feelings I was completely overwhelmed by the job that was now in front of me. I now had to receive a whole new education. I had to learn how a complicated and very bureaucratic system worked in order to get her services she needed. What services are there to help her? What do I need to do to get them? There were school issues, home issues – what are the differences between the school supports, what insurance covers, and what the state offers? How do I qualify? 5 years later, I am still learning my way through the system. I remember at the time saying to people, “I feel like I need another master’s degree just to raise my child.” I was completely out of my depth and beyond my abilities. I cried often. I lost A LOT of sleep! I didn’t think I could be all she needed me to be. For me, this was the hardest part.
How I got through…
Perhaps you just received your child’s diagnosis. Maybe you are going through the harrowing diagnostic process right now. You may be feeling and experiencing the same things that I did. I want to give you some advice and some encouragement that I found along the way.
- Take it one step at a time…set one or two goals per day. “Today I will make an appointment with the developmental pediatrician and I will fill out this form.” “Today I will make a phone call to so-and-so who is a special ed teacher and get their advice.” “Today I will read up on the laws regarding my child’s diagnosis.” “Today I will find a therapist for my child.” Take it one step at a time. Looking at your child’s whole diagnosis and what that means for their whole life does not help anyone. Just keep taking one step forward. Before you know it, you and your child will be in a whole other place! You will have grown together – I promise!
- Remember the good…While Autism certainly comes with its challenges, your child also will have their strengths and gifts. Nurture those gifts in your child. Help them to see the gifts God has given them. Remember that even though they struggle, they are wonderfully made – just like everyone else.
- Talk to everyone who knows anything about your child’s diagnosis….Do not try to go it alone. Proverbs says “There is wisdom in a multitude of counselors.” When my daughter was diagnosed, I called everyone I knew who could help me; and when they said they knew someone who could help me in another way, I called them too. I sought out the advice of teachers, therapists, friends, other moms. If someone could help me; I asked for help.
- Your child will be the village’s child… You need to come to terms with the fact that you cannot do this alone. Your child will have a team of people to help them. Throughout the years our team has included speech therapists, occupational therapists, physical therapists, behavioral therapists, psychologists, social workers, classroom teachers, special education teachers, the school principal, and the director of elementary special education. There have been service coordinators, and we have a case manager through our health insurance. Your job as mom to a child on the spectrum is one of manager. You are the one who coordinates the help for your child, facilitates communication between the members of her team, and ensures that everyone is on the same page.
- Take the time to process your emotions…Don’t get so lost in the work that you don’t take the time to feel. Feel your worry, feel your pain, feel your joy each time they take a step forward. Stop and feel whatever it is that you feel.
- Remember your child is SPECIAL in every sense of the word…Do not define your child by their diagnosis. Rather, use the diagnosis to understand their struggles and to get them the help they need. Remember, they are a whole person. They have likes and dislikes and opinions. They have talents and strengths. Yes, they have struggles, but everyone does. Their struggles happen to have a name. So what, really? They are like everyone else. Everyone has strengths; everyone has weaknesses. Support their weaknesses and nurture their strengths
- Be open about your child’s diagnosis…I am not going to tell you what the right decision is for your family – but I am going give you my perspective as a mom who gets it. My experience is that openness about my child’s diagnosis is the best thing I could have done. My child’s classmates are more patient with her and adults treat her with more understanding because they know her diagnosis. She is more self-aware, and knowing her diagnosis has given her more self-esteem, not less. I have found that most people respond with love and understanding as you help them understand what you are going through. The other benefit is that in your own small way, by being open, you are helping to raise awareness, expand people’s minds and perceptions, and help make the world a friendlier place for people with autism to live.
If you have any questions for me after reading this – or if I can help in any way, please e-mail me at firstname.lastname@example.org; or respond in the comments below.