Therapist Neurodiversity Collective

.Therapy.Advocacy.Education.

Julie Roberts, M.S., CCC-SLP
Cite: Roberts, J. (2019, November 5). A Letter from an SLP to a Parent, Immediately After an Autism Diagnosis for a 5-Year-Old. Therapist Neurodiversity Collective.

Dear Parent,

     It was such a pleasure speaking with you today. Thank you for taking the time to speak with me regarding your child’s Autism diagnosis and the results of the speech and language evaluation. I want you to know how wonderful I think your child is. He is precious, sweet, hard-working, and tries his level best to do what is asked of him.

     Your child is eager to please – so much so, that I worry about him not being able to advocate for himself at the expense of trying to obey authority, even when it’s uncomfortable for him.    

     During the evaluation, I noticed his body language indicating “distress.” I asked him if he needed to use the restroom and he immediately got up, went into the tiny bathroom in the office, closed the door, used the toilet, and then washed his hands and returned and sat back down at the table.

     Halfway through the evaluation, I handed him a piece of unwrapped candy. He put it in his little hand and held it there. I asked him if he wanted to put it into his mouth and he did so, immediately. And he held it there, obviously uncomfortably – his little face showing displeasure, but his behavior demonstrating compliance. I handed him the trash can and said that he could spit it out if he didn’t like it. And he quickly did.

     I agree with you that he is very smart. As I wrote in the report, the standardized speech and language scores are only an estimate of what he may really know. I had to mark things wrong in the evaluation, even though I knew that he knew the target concept. For example, when I asked him what color the large ball in the picture was, he said “heavy,” and he said the yellow ball was “light.” His descriptions of the balls were accurate on both accounts, but he did not label the colors as prompted. Yet he easily labeled colors when I put crayons in front of him. I noted this information and highlighted his strengths in the speech and language evaluation report, and these and other identified strengths will be the starting point of building a therapy plan for him.

Your adorable, wonderful child is still the same person he was before you received that phone call.

     Please know that I know he is a wonderful child; and that I understand that his meltdowns in the classroom these first few weeks in kindergarten are not malicious or because he doesn’t want to follow the classroom rules. And I will tell the teacher that he is not stealing; I will tell her that he truly doesn’t understand that the toys out of the treasure chest must be earned or that he must ask first before he takes a pencil. Yes, he is a very good boy. Right now, he just doesn’t understand these unspoken social expectations that his peers seem to instinctively know. He is not trying to disrupt the class, nor is he attention-seeking when he cries and screams as his peers do choral reading. Sensory overload and external stimuli, as well as auditory processing difficulties, make it quite difficult to function without additional support in a very noisy, bright, crowded, and busy classroom.

     Your child has difficulty understanding indirect requests, and messages which must be implied. He will, however, make every effort to comply with a clear, direct request. He doesn’t understand how to self-advocate in the classroom for personal needs such as asking to use the restroom, asking for a drink of water, or for how to tell an adult that he is being bullied by a classmate. He doesn’t understand why he has to remain seated without first asking the teacher if he can get up and walk around. As I expected, and as you explained to me on the phone today – in your house, he doesn’t have to ask to go to the bathroom, walk around, play with his toys or use a pencil. He just does or gets what he needs independently because these are the expectations in your home. These are two sets of very different expectations, and the new demands in his classroom have got to be confusing and upsetting to him. It’s no wonder it’s been such a hard first quarter.

     I will tell the staff that sometimes his only way to communicate discomfort or being overwhelmed is through behaviors such as verbal outbursts or meltdowns because right now your son does not have the language or the self-advocacy skills to communicate in a more effective manner. The first thing I am going to do is ensure he has access to AAC. My long-term plan is to help him learn how to convey his needs, thoughts, ideas, desires, and aspirations by recommending additional supports in the classroom and with speech and language therapy.

     Please remember what we talked about regarding eye contact, echolalia, sensory needs, picky eating and especially how to choose therapies that will respect his dignity and autonomy, and that won’t crush the joyous and precious little person that he is. I will advocate for him; but because you will need to learn how to become be his biggest champion, I have sent you links to resources for you to begin to educate yourself about Autism. I understand that you were very upset yesterday when they told you the diagnosis. My hope is that you begin to view this diagnosis differently. Your adorable, wonderful child is still the same person he was before you received that phone call. The good news is that there are people who can teach you how to support him and help him to have a happy childhood.


With kindest regards, the SLP who evaluated your child.

Helpful Resources for Parents of Autistic Young People

Applied Behavior Analysis (ABA): https://therapistndc.org/applied-behavior-analysis-aba/

Augmentative and Alternative Communication (AAC): https://therapistndc.org/therapy/aac/

Behavior, Self-Harm, or Aggression: https://therapistndc.org/behavior-self-harm-or-aggression/

Education: https://therapistndc.org/education/

Feeding Therapy – Respectful & Safe Practices: https://therapistndc.org/therapy/feeding-therapy/

Free Neurodiversity Printables: https://therapistndc.org/free-neurodiversity-printables/

Non-ABA Evidence Based Practice: https://therapistndc.org/therapy/non-aba-evidence-based-practice/

Non-ableist Pragmatic Language Therapy: https://therapistndc.org/therapy/non-ableist-pragmatic-language-therapy/

Social Skills Training: https://therapistndc.org/therapy/social-skills-training/

Why not Positive Behavior Support (PBS), Positive Behavioral Interventions and Supports (PBIS), or Positive Reinforcement? https://therapistndc.org/positive-behavior-support-pbs-positive-behavioral-interventions-and-supports-pbis-or-positive-reinforcement/

 

 

 

 

Don’t Mourn for Us: “Parents often report that learning their child is autistic was the most traumatic thing that ever happened to them. Non-autistic people see autism as a great tragedy, and parents experience continuing disappointment and grief at all stages of the child’s and family’s life cycle. But this grief does not stem from the child’s autism in itself. It is grief over the loss of the normal child the parents had hoped and expected to have. Parents’ attitudes and expectations, and the discrepancies between what parents expect of children at a particular age and their own child’s actual development, cause more stress and anguish than the practical complexities of life with an autistic person.”

After an Autism Diagnosis: 13 Necessary Next Steps For Parents

Sensory Overload

ECHOLALIA: Remember that when your child repeats your words, he is not mimicking you. When he does this, and when he repeats commercials, movie lines and book lines over and over, this is called echolalia, and it is a form of communication. Remember to acknowledge his echolalia as a form of communication, and try to help him expand it. 

Eleven Ways You Can Make Your Autistic Child’s Life Easier

Eye Contact: For The Recipient’s Validation Only

Autistic people are not tragedies. My life has value and joy

Standard tests underestimate nonverbal children with autism

Autism is a valuable part of humanity’s genetic legacy

Where 75% of workers are on the autistic spectrum

Microsoft Made a Genius Change to Its Hiring Process. (Amazon, Apple, and Google Should Learn From It)

 

Letter to the Editor of ProPublica in Response to ” UnitedHealth Is Strategically Limiting Access to Critical Treatment for Kids With Autism”

Subject: UnitedHealth Is Strategically Limiting Access to Critical Treatment for Kids With Autism, by Annie Waldman
Dear Stephen Engelberg,
As avid readers of ProPublica, we express our concern about the ProPublica December 13, 2024 article, “UnitedHealth Is Strategically Limiting Access to Critical Treatment for Kids With Autism,” by Annie Waldman…

Read More »

IEPs, Ableist Goals and Parents’ Rights

A neurodiversity-affirming parent’s anonymous post to Therapist Neurodiversity Collective requested information that might help them advocate for their special education student in the IEP meeting. From the information contained in the post, it appeared that the school, although possibly unintentionally, was not aware of IDEA and Supreme Court decisions, and therefore violated parental rights to meaningfully participate in and contribute to the IEP meeting. Additionally, it is clear that our public school system is lagging in knowledge and application of contemporary research evidence about autism, and as a result, the kids are paying the consequences with poor mental health outcomes. 

Read More »
Picture of young student with brown hair, head in hands, sitting at desk.

Not allowed to say “I can’t”

“The kids in my class aren’t allowed to say I can’t.” I’m in an IEP meeting for young neurodivergent student who’s struggling in class. The committee is talking about all the reasons why this student should not be struggling because their standardized cognitive and language scores show they have the ability to learn and do the work.

Read More »
Julie Roberts, M.S. CCC-SLP