Seeking an Autism diagnosis for your child can be overwhelming. Getting a diagnosis can be a long and complicated process for parents between the initial identification of symptoms, voicing their suspicions to medical professionals, and then finding the right services and supports. Often parents find themselves navigating new services to find the right supports for their child’s sensory needs, and the right providers for Speech Therapy, Occupational Therapy, or positive behavior supports.
April is Autism Acceptance Month, and this is 4-year-old Evelyn’s story as told by her mother, Ashley. This is an account of their experiences in identifying Evelyn’s needs, the process of diagnosis, what autism looks like for Evelyn, and the successes and pitfalls they have encountered on this new journey as they learn and look for supports and meaningful resources.
Evelyn is an energetic young girl who is blessed with an abundance of curiosity and creativity. She is intelligent, funny, thoughtful, and loves music and singing. She is also a prolific artist and often draws multiple pictures a day… all of which she expects her mother to keep and cherish. Evelyn is currently in a small preschool class and will be turning 5 in July and starting kindergarten in the fall of 2022.
When Ashley asked Evelyn, for the purpose of this post, what SHE believed she is good at, Evelyn confidently told her mother: LAUNDRY. Ashley explained that Evelyn has been learning to help with chores around the house and she has been very motivated by chore money. She’s been helpful and she has gained confidence through the helping and the reward.
Most importantly, it is clear that Evelyn knows – without question or wavering – that she is loved and an important part of her family.
AUTISM SUSPICIONS AND DIAGNOSIS
Ashley says that she and her husband (Evelyn’s father), Justin, knew from a young age that Evelyn was different. Her speech was delayed, and she had some intense sensory needs that involved both sensory seeking and avoidant behaviors. Evelyn never babbled as a baby and primarily communicated through growls and screams. She started speaking when she was 2 years old after an early intervention to help her develop her language skills in Speech Therapy. Getting her into therapy was a struggle, but she is now completely caught up on all her speech developmental milestones.
At an early age, and prior to getting any diagnoses for Evelyn, Ashley and Justin also sought out Occupational Therapy to help her learn how to manage the sensory processing challenges they saw her face. Loud noises and places that were visually overstimulating were often overwhelming for her and caused her extreme distress and anxiety. She continues to constantly seek sensory activities that she enjoys, like swinging.
Ashley suspected that Evelyn may have had autism but when she expressed her concerns to Evelyn’s doctor, Ashley was told to “wait and see”. This was frustrating for her to hear given that Evelyn’s doctor rarely, if ever, saw the reactions and emotional meltdowns that resulted when she tried to tolerate prolonged overstimulation.
At about 3 years of age, Evelyn’s Occupational Therapist sat Ashley down and shared her own suspicions that Evelyn may have autism. Ashley said that she started to cry, not because she was overwhelmed or upset with the suggestion, but because she was incredibly relieved that someone else saw and finally validated her concerns. It was a relief to hear someone acknowledge the concerns that she had heard doctors repeatedly discount.
Ashley and Justin decided to find a new pediatrician for Evelyn. They knew they wanted to find a doctor who was more willing to listen to their concerns and who was also supportive of their desire to seek an autism assessment. The new pediatrician they found recommended they visit a developmental pediatrician for the assessment, and they made an appointment. They waited 8 months for Evelyn’s initial appointment, and she was officially diagnosed with Autism (Level 1) in January 2022.
EVELYN’S CHALLENGING EXPERIENCES WITH AUTISM
Everyone with autism experiences it differently. As previously mentioned, Evelyn has intense sensory needs. She has worked for a couple of years with her Occupational Therapist to learn how to communicate with others when she is overwhelmed and needs space. She now tells her family, friends, or teachers “I need space!” when she is feeling overloaded and knows that she can ask for earmuffs at preschool when things get too loud for her. The level of self-awareness and coping skills she’s developed is remarkable for a 4-year-old and a testament to the unrelenting advocacy of her parents and devoted therapists.
Despite these skills, Evelyn’s peers do not always understand what she means when she asks for space. Evelyn is incredibly friendly and wants to be social and develop friendships, but she has a hard time connecting with other children she doesn’t know. Continuing her conversations with them in a natural way can be challenging for her, particularly if the other child wants to talk about something in which Evelyn has no interest.
She also has difficulty with subtext and intricacies in speech and language and sometimes this affects her understanding of what people are asking of her. She needs instructions to be specific and thorough.
When explaining this, Ashley shared an experience where Evelyn was asked by a therapist to “Make a cheeseburger out of play dough”. Evelyn was confused by the request and didn’t understand that the therapist wanted her to make a pretend cheeseburger that included the visual elements of a real cheeseburger. Evelyn told her that she couldn’t make the cheeseburger “because cheeseburgers are not made out of playdough”.
Evelyn is also a passionate rule follower and perfectionist. She wants to understand WHY the rules exist and she will ask a lot of questions to try to understand them. Ashley says that recently they’ve been discussing why bad language is ok for adults to use, but not for her. (An admittedly complicated conversation, that likely has a lot to do with vague age appropriateness norms and a more firm and mature understanding of the proper time and place for “bad” words!)
Evelyn’s perfectionism can be extreme and Ashley says that she can be very hard on herself. She tends to think in black and white with an “all or nothing” mentality. If she doesn’t think she has done something well enough, she gets very upset. Ashley and Justin are actively trying to help her with this. However, on the flip side, when she knows she understands something or can do it well, her confidence is bold and proud.
TEACHING EVELYN ABOUT HER AUTISTIC BRAIN
Evelyn is aware of her autism diagnosis and Ashley shared she was impressed when the developmental pediatrician spoke directly to Evelyn about it. The family discusses it openly and regularly and is teaching her that she has a special “autistic brain”, and “special” or “different” doesn’t mean “bad”. Evelyn knows she thinks and processes things differently than others, and she is proud of it. She has been eager to tell people about her “special brain”!
Ashley has also done research and purchased several children’s books about autism that she has read and talked about with Evelyn. The books have been helpful and they explain the difficult and complicated diagnosis to Evelyn in a way that is easier to understand.
As Evelyn’s personal assistant, and one of her strongest advocates, Ashley has a big job. She’s now learning about autism and how she can best support her daughter. She’s found comfort in learning from others and has been surprised by how many parents of children with autism she already knew. She frequents Facebook support groups that are run by mothers of children with autism and feels that they’ve given her a safe environment to talk about things, vent, and ask questions.
The developmental pediatrician who diagnosed Evelyn provided them with a binder of helpful information on autism that included printouts and resources after her diagnosis and Ashley has also found the book Uniquely Human: A Different Way of Seeing Autism by author Barry M. Prizant, helpful as well.
Ashley admits that she is a “googler”, and she likes to research her own information. She looks for info from varying sources and likes to hear everyone’s experiences so she can take the information and decide what may or may not apply specifically to Evelyn and their family.
FRUSTRATIONS AND WHEEL SPINNING
Evelyn currently has some phenomenal doctors and therapists, but it has taken a lot of work and rejection to assemble this team. Ashley says that she has not gotten a lot of great or consistent information from providers, and she has been incredibly frustrated with the “wait and see” mentality she’s experienced. They did not anticipate the frequency that they would be told that Evelyn’s concerns weren’t significant enough to warrant services even after her official diagnosis.
Ashley has had numerous issues finding providers that will accept Evelyn for some therapies despite her autism spectrum disorder diagnosis. Evelyn seems to fall into a grey area where she has enough concerns to meet a diagnosis, but not enough obvious need for some providers to want to accept her into programs and therapies.
Evelyn can speak and communicate her thoughts and feelings and she is friendly. Many clinics Ashley has reached out to are hesitant to agree to things like additional speech therapy to help with her pragmatic language skills even though the therapies have been deemed necessary by Evelyn’s developmental pediatrician. She has been repeatedly denied services.
“I wasn’t expecting for her to be denied so much after the diagnosis. I expected the medical professionals to understand”, Ashley said.
Her diagnosis felt like it was going to open a door to services and options, but instead, they found it difficult to find willing and available providers to serve Evelyn and her specific needs.
“They see her for a few minutes while she is she is happy and relaxed, and then they deny us.”
Ashley has been able to find a clinic that will offer Evelyn additional Speech Therapy, but it has taken persistent research, phone calls, evaluations, and frequent disappointment to find.
THE IMPACT OF THERAPY
The positive impact of the Speech and Occupational Therapies that Evelyn has participated in is undeniable. They’ve helped teach her how to communicate and express herself, and also given her valuable tools to cope with the complex and often overwhelming feelings that are part of her daily life.
Evelyn will begin participating in ABA therapy during the summer to help prepare her for kindergarten. (For more information on ABA Therapy: CLICK HERE) There she will play with a group of other children and be encouraged by therapists to use tools and approaches that will help her with social skills or any other target behaviors identified by her parents or therapists.
ABA staff will also assist Ashley and Justin with the IEP (Individualized Education Program) process for Evelyn when she starts school. They will be able to help offer creative solutions to barriers and they will also help Ashley and Justin address any special accommodations Evelyn may need with the school system and her teachers.
Evelyn is ready to start school, but like many mothers of incoming kindergarten students, Ashley doesn’t express the same readiness. Evelyn has offered her mother supportive and sage advice, “If you miss me during the day, look at my picture.”
Ashley expressed how important she believes it is to seek out early interventions and therapy, despite any stigma or negative connotations. It is beneficial and, in her words, it “isn’t going to hurt”. (She isn’t going to get “TOO good” at communication, regulating her emotions, or managing her sensory needs!)
MOM’S WORDS OF ADVICE
I asked Ashley what words of advice she might have for others who are considering seeking out a diagnosis.
Ashley’s words of advice were specific:
Trust yourself and your instincts. Keep pushing. Don’t take ‘no’. And don’t listen to people telling you ‘Let’s wait’. If I would have taken the first ‘Eh, it’s fine’ seriously, there would have been a point where Evelyn would have just shut down. She was becoming so overwhelmed and withdrawn. Getting her into therapies really helped with that. She’s come such a long way.