By Evelyn Roman-Santos, MSW

School Social Worker

Parent of a child with Autism/Hyperlexia

Written: June 30, 2007/April 21, 2014/September 19, 2024

Please don’t tell me my child has autism!

As a school social worker for the Public Schools, today I had the opportunity to complete an assessment on a child who had the same symptoms as my daughter when she was three years old.  The student could recognize words and letters at 2 ½; however, he could not communicate appropriately with others and had deficits in his social abilities.  

It was interesting to find out that the parents were precisely in the same spot I was when I was told that my child suffered from autism.  As with the parents, I did not want my child to be labeled “autistic.”  In my understanding then, this was a terrible word, and my child could not have such a horrible thing.  She seemed fine in many areas.  She was so intelligent and beautiful.  How could she have such a terrible thing?  

As with the parents, I had done my homework, read all the research, sought the expert’s opinions, and thought I was well aware of the different diagnoses.  I was able to conceive that my daughter suffered from Hyperlexia but not autism.  I understood that Hyperlexia was under the umbrella of autism, but she was not autistic in my mind.  

When I went to my daughter’s staffing, I had a group of people who reassured me that, yes, my daughter was autistic.  Due to my denial and apprehension, I did not want to accept this.  I noticed that the parents felt the same way I did then.  

As I go back to my experience, I realize that I wish someone had told me the following:  

1. There are many levels of autism, and there are many categories of autism in the spectrum.  

2. In public schools, there is only one label of autism for all the different categories.  The schools do not follow the medical model.   It doesn’t matter if your child has Hyperlexia, Asperger's, Sensory issues, Processing Deficits, or just a few characteristics of autism;* he will still need to be qualified for the autistic program to provide him services.  If the child has “a little bit of autism (high functioning) or a lot of autism (low functioning),” it doesn’t matter.  To get him services through the school system, he needs to be qualified for the autistic program.   

3. The fact that your child is called autistic is not what is essential; what matters are the services that will be provided to assist him.  

4. Your child will most likely be categorized as autistic forever, but he will not remain the same.  As many parents do, I didn’t want my child to carry that label for the rest of her life.  I thought if the label disappeared, she could be an average child.  

5. At three years old, my daughter had some of the behaviors of autism: throwing tantrums, ignoring other children, deficits in social interaction, not being able to express herself, being rigid with things, and needing a specific routine, to name a few.  As she got older, many of those behaviors disappeared; others appeared or remained.    

6. Having the label of autism is not always a bad thing.  The child is protected under the Individuals with Disabilities Education Act (IDEA) , which states that he has to receive specific services due to his disability.  

7. Acknowledging that you have a child with autism is a tricky thing; there are many feelings involved.  As with me, I felt that someone came and stole my child and her future when she was three years old.  I grieved having an average child and felt guilty to think like that.  However, you must accept the diagnosis to provide the services and do what is in your child's best interest.  Otherwise, you are hurting your child more.  The earlier the child is diagnosed and receives interventions, the better his future.  By depriving your child of the interventions and services, you are hurting your child.  As a parent, you must accept reality and consider what is best for your child.  

8. If services are recommended in a very restricted environment, this does not mean that your child will remain in an “autistic classroom” for the rest of his life.  As the child’s behavior changes and the characteristics of autism decrease or disappear, he may be able to qualify for services in the least restricted environment.  (And don’t let anyone tell you that this cannot happen)  My daughter has been a different child every year.  As she became older and matured, her behavior changed for the better.  She continues to have difficulties in some areas but is not the same child as in the past. She has had a one-to-one aide from kindergarten to sixth grade.  We are transitioning her, so she will not need an aide forever.    

9. If you take your child for independent evaluations, that is fine.  But also talk to individuals who work for the school system and are familiar with programs for children with autism.  Individuals outside of the school system may not be familiar with how the system works and how services are delivered within the system.  

10. Don’t expect the school system to provide all the services your child needs.  Many school systems lack the resources and staff to provide your child with the quality and amount of services your child needs.  If you want to see your child progress, supplement their school services with outside sources.  My child went to a beautiful place for many years: the Center for Speech and Language Disorder in Elmhurst, Illinois.  Investing the money and time was worth it. You can arrange a visit to the placement assigned and interview teachers at the school. You can have a say in your child's placement.  

11. At three years old, I hesitated to leave my daughter with strangers.  I wondered how she would communicate with others if she could not communicate with me.  To ease the transition to school, I enrolled my daughter in the summer ESY program. I stayed with her for a while and observed and volunteered to help in the classroom.   When she went to the program during the fall, she was used to the building, and I felt more at ease to leave her.  Teachers appreciated my involvement.  

12. I did many hours of research on Hyperlexia.  When my daughter started school, I placed several articles on hyperlexia in a binder and provided them to the teachers.  I encouraged them to read them and research the topic more. I later found out that many elementary school teachers might be familiar with some characteristics of autism but need further information on the specific categories of the spectrum.  They appreciated that I told them what to expect from my daughter and how to help her best.  

13. I met with a speech pathologist and itinerant autism teacher to introduce myself and get feedback from them about my daughter’s progress. I didn’t wait for an IEP to find out that information. I was in contact with them through email and met with them regularly. With their information, I was able to assist in coordinating better services for my daughter in the classroom. With the information, I could also give the outside speech pathologist feedback about my daughter’s school progress.  

14. You are the expert. Do not leave everything up to the professionals. Educate yourself regarding the disability to be a strong advocate. The Internet has many resources. 

15. Become involved in support groups with other parents with children with the same disability.   I joined an e-group community and communicated with parents from all over the world about the struggles and achievements of their children with autism and hyperlexia.  The support group helped me help my daughter.  

16. Keep a folder of all the documents and bring them to the meetings. The more information you have in writing, the better you can share.  

17. Write a list of your child's strengths and weaknesses and share it with the school. This list will help you keep track of changing behaviors, and when you look back, you will realize your child's progress.  Sharing it with your child’s teachers will help them implement the services your child needs.  

18. Find out what other services Physical Therapy (PT), Occupational Therapy (OT), Counseling and Assistive Technology can offer your child. Only some may be familiar with them, and they may only be provided to you if you ask.   

19. Don’t listen to people who paint a bleak picture for your child: expect the best. It is difficult to understand unless you have a child with autism.  Many professionals know the information because they have learned it from a book or in college but have no first-hand experience in living with a child with autism.  Every child is different, and circumstances change.  No one can accurately predict what will happen in your child’s future.  Don’t get discouraged.  Just trust that you will do the best for your child, and he will be fine. 

20. Don’t explain too much information to people not directly involved with your child.  Children with autism are looked at by people who don’t know the condition as “spoiled.”  Ignore this.  

21. Organize with other parents to change how the school system and insurance companies handle these children. Many insurance companies do not pay for treatment for children with autism because they consider it a pre-existing condition.  Children with autism are deprived of services outside the school because parents can not afford them.  

Given my frustration today in being on the other side of the table diagnosing a student with the same disability as my daughter.  I also have a list for professionals to keep in mind.  

1. Although you are a professional with many years of experience and schooling, remember that the parent knows their child best.  

2. The parent may be in denial, but this is not intentional or due to ignorance.  Being in denial is part of the process that a parent with a child with a disability goes through.  It is only up to the parent when he leaves that stage.  You cannot say or do something to make the parent “snap” out of that stage.  A parent with a child with autism may hear several times the same information, but it may not process until something clicks.  I remember a specific moment when I was sitting at a student’s Individual Education Plan (IEP) conference, and the parent showed me the web page of the Hyperlexia Organization.  I described that moment as a 

“ moment of revelation.”  I could not believe how all of my daughter’s symptoms were being represented under the name of Hyperlexia.  Before that, I was told that your daughter seems different; she doesn’t interact with other children, she doesn’t answer her name, etc.  But I wasn’t ready to hear it and deal with the truth.  

3. Be gentle and not judgmental toward parents. Try to empathize with their feelings and put aside your values.  

4. Take the time to explain to the parent what it means to be autistic and the services provided under the label.  Don’t try to rush the staffing or evaluation.  Remember that it is a challenging moment for the parent to hear from several professionals that their child has autism.  

5. Don’t try to predict the child’s future.  Stick to your findings and the result of your evaluation.  The parent does not need to hear speculations that aren’t based on facts.  

6. Explain thoroughly how the school system works for children with autism.  Please don’t assume that because the parent knows a lot about autism, he may be familiar with the programs provided.  

7. Explain the advantages of being qualified for the autism  program in the schools and what this means for the rest of the child’s life.  

8. Don’t try to make yourself seem like you’re the only expert.  The parent may have researched and may be very familiar with autism.  

9. Find out the parent’s level of understanding and go from there. Please do not assume they know nothing. Encourage the parent to become informed about autism and the different categories according to their wishes, and explain that they have many rights and responsibilities. They can do further research and make a decision later.    

As a school social worker and parent with a child with autism, I hoped to have given parents and professionals information that I wish had been given to me back when my daughter was first diagnosed with autism/hyperlexia.  Looking at the parents in today’s staffing, I could relate to their many challenges and feelings.  Despite the worries, I am reminded that things did get better for my daughter.   I remember that when she was three, I was worried about what she would be like when she was six.  When she was six, I was concerned about what she would be like when she was ten.  When she was ten, I was worried about what she would be like when she was 12.  Now, I worry about what she is going to be like when she is a teenager.  I keep asking her, “Are you going to become a rebellious teenager?”.  Of course, she says “No”.  

She is now almost thirteen, and as I look back, I can honestly say she is not the same child.  She has made so much progress that I have to force myself to remember what she was like.  When I looked at the parent today, I couldn’t help but tell her, “Your child will be all right.”  After all, those were the only words that I would have preferred to hear when my daughter was first diagnosed.  Whether she gets the label of autism doesn’t matter; what matters is that she is all right. She can carry a conversation with me, she can socialize with others, and she is academically at a 12th-grade level.  She has a bright future ahead of her and is a beautiful human being.  

Continuation from an article from 2007 to 2014   (Seven years later).

As time has passed, I decided to continue this article and describe what my daughter’s struggle with autism has meant in her life.  In the previous paragraph, my daughter was in 7th grade.  She had a one-to-one aide, and school was going well.   Even though she was brilliant, she attended a regular classroom in a regular school.  School was easy for her then, and she could participate in extra-curricular activities like the Chicago Children’s Choir.  She went on tours with the choir and had the opportunity to socialize with her peers.  I volunteered in her eighth-grade field trip to Washington, DC, and felt sad when I realized she had no real friends.  The other children talked to each other and seemed to have a relationship, but not my daughter. They acknowledged her by saying “hi,” but no genuine relationships had been established during the past eight years with the same peers.  They knew she was different and seemed to ignore her eccentricities, but they also ignored the natural person.   My daughter did not seem to be bothered by it.  She never complained of feeling ignored, and in her perception, they were all her friends.  

As a parent, I dreamed she would find at least one good friend in high school.  Choosing a high school and getting into one was not a problem for my daughter.  She took the test required to get accepted at Northside College Prep and did well.  Two thousand five hundred students applied to the school; however, only 250 were admitted, and my daughter was one of them. She was accepted without any difficulty or special accommodations.  She continued to receive services from a one-to-one aide.  Even though she initially didn’t want a resource class, it proved very helpful.  Given that all her classes were at the honor level, she needed a place to receive academic support and help her keep up with the fast pace.  The first year was very rough.  She was picked up on the yellow bus by 5:40 in the morning and arrived at the house by almost 5:00 p.m.  The amount of homework she was expected to keep up with was enormous.  Even though we informed the school staff how many hours my daughter spent doing homework, they did not want to decrease the amount or give her more than two days of extended time to turn it in.  She would stay up until 3 or 4 in the morning doing homework.  She had no time to do anything but school and homework.  It became very overwhelming and stressful.  It affected all of us in the family.  We could no longer do leisure activities since my daughter had to do homework constantly.  My husband and I didn’t know what to do.  We wanted to take her out of the school, but she seemed to enjoy the challenge. She didn’t want to have to start in a new school.    We didn’t know where else to send her.  If we put her in a regular school, she would probably hate it since she would not be challenged academically. She also explained how much she appreciated that no discipline issues in her classes affected the learning environment.  She appreciated the other student’s willingness to learn.   We decided to advocate for her.  We decided to involve the school’s administration.  We explained our concerns about our daughter being overwhelmed with too much homework and the fact that the accommodations that were in place were not working.  The assistant principal agreed to accommodations that were suitable for my daughter.  With the new accommodations, my daughter could complete the next three years.  She still spent all her spare time doing homework and did not have time to socialize or have leisure.  However, she felt less overwhelmed.  Senior year came, and she still had no friends, not even one girl friend to go with to the Senior Prom.  The rigorous academic program did not help my daughter socially.  She had no opportunity or the time to establish a real friendship.  At one point, she even complained that she felt she was invisible.  Her peers ignored her, and she felt “alone”.  This broke my heart, but I hope things will be different in college.  

Continuation 8/20/2024

My daughter got a 29 on her ACT, (most people average 18-21)  She is now 29 years old, and it has been an arduous journey for her to complete her bachelor's degree.   On and off, she has been in college for ten years. She followed her sister's footsteps and went to a private program. They were not willing to support her, and she was dismissed.  She was devastated.  She improved her social and communication skills during the program due to being with peers 24 hours a day. She took a year off from college to recover and attended another private university the following year. She stayed in the dorm, but it was too stressful for her. Her lack of executive functioning skills became an obstacle to her success.  She had difficulty managing her time and keeping up with her homework and became very overwhelmed. We advocated for her at the university, but they were not equipped to provide all her needed services.  After that, she attended a community college, but there, they expected her to be very independent, and they did not seem to understand the needs of students with disabilities. She was one of many students attending the college. The following year, she attended a private community college. She was a bit more successful; however, due to her processing deficit (1%), completing the assigned essays or research papers would take her many hours.  Despite not welcoming their parents due to confidentiality laws,  we also advocated for her. Despite her many hours completing her essays, the professors did not accept her late work.  It was a very frustrating experience. One day, she became so overwhelmed that she left the school before we could pick her up without letting us know. We were frantic, thinking that something could have happened to her. It was an awful experience. We realized that we needed to find another alternative.   

My sister mentioned that her son, who also has autism, began to attend Beacon College, Leesburg, Florida, the only University in the country that admits only students with IEPs.  Moving to a warm climate was one of our goals.   We decided to sell our home and move to where Beacon College is located.  She is now a junior majoring in web design. Unlike the other universities she attended, Beacon provides students the support they need the support to succeed. Each student has a learning specialist who monitors their progress, holds them accountable, and offers academic advice.  The parents are welcome to advocate and meet with the learning specialist. The professors are available to meet with students. The classes are held in small groups, and there are no tests. The professors are well-versed in the various disabilities.  She continues to isolate herself and doesn’t have friends. She can carry on conversations but prefers to do so when she finds the topic interesting. Social media has allowed her to relate to others and express her opinions on various issues. She considers the people that she talks to on social media her friends. She shared with me that she was selected to co-lead a group in Discord.  

Having a daughter with autism has taught me many lessons.   First, not everyone is familiar with autism, and not everyone is willing to learn.  Second, as parents of college students, we must continue to advocate for our children.  We must do our homework and find out if the university is willing to help your child with autism. We must prepare the school staff and explain to them what to expect because your child has autism. We must never give up on our child with autism and continue to encourage them to follow their dreams despite all of the disappointments and obstacles they encounter throughout their lives. 

 Even though autism chose my daughter and she did not choose autism, it will live with her for the rest of her life.  She has been discriminated against and rejected in the name of “not making others uncomfortable,” “thinking about others in the group,” and “not every program is for everyone.”  I wonder how this world will be when “neurotypical” people realize that one out of 36 children are now diagnosed with autism, and they will grow up to become teenagers and adults.  “Neurotypical people” will need to learn how to live, work, play, and share their lives with individuals who have autism.  I hope that they will choose to realize that everyone is different and we must love and serve those with autism.  

My daughter is a beautiful, intelligent, and talented young woman. She has changed so much since her diagnosis and has a great future ahead of her. I’m proud and privileged to be her mother.  

*https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3716827/

DSM-IV’s diagnostic subcategories (autistic disorder, Asperger’s disorder, pervasive developmental disorder not otherwise specified (PDD-NOS), Rett’s disorder, and childhood disintegrative disorder) were located within the Pervasive Developmental Disorders (PDDs) classification.

Autism diagnostic criteria: DSM-5 | Autism Speaks

The DSM-5 made some major changes to the diagnosis of autism from earlier versions. Most notably, it removed the previous diagnosis of pervasive developmental disorders and its subtypes (autistic disorder, Asperger’s disorder, Rett Syndrome, Child Disintegrative Disorder and pervasive developmental disorder—not otherwise specified [PDD-NOS]) and formally created the diagnosis of autism spectrum disorder. This change was made to acknowledge the understanding that these categories were describing symptoms under the same umbrella rather than different disorders altogether.

Jesus knows what you are going through with your child. He selected you to be the parent of a child with a disability, and this is a privilege.    Keep your eyes on HIM and never lose hope.   HE inspired me to write this song in 2012 when I felt hopeless. Please listen and be blessed.