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Adjusting to an Autism Diagnosis: The Next Steps

January 5, 2021


The days following a diagnosis of autism might feel like a grieving period for some parents. They may need to take some time to process what the diagnosis means for their child and family.

They may need to grieve for the life they thought their child would have. This may take some time, then, after the dust settles, they must start researching and planning the next steps. Life may be different for their child, but their child can still lead a full and enriching life. It is therefore important to be proactive and early intervention can be critical.

Adjusting to an Autism Diagnosis: The Next Steps

Autism is defined as a neurodevelopmental disorder characterized by impairments in social skills, sensory issues, repetitive behaviors, and restricted interests. Intellectual disability is not a characteristic of autism but, in some cases, it could be a comorbid condition. In most cases of autism, the individual has average to above average intelligence.

Many individuals with autism can grow up and lead a normal life, which includes living on their own and taking part in romantic relationships (Lewis, 2018). However, to promote the most optimal outcome, early intervention services should ideally start as soon as you receive that diagnosis.

The importance of making plans early on

Early interventions may include speech and language therapy, play therapy, occupational and physical therapies, and behavioral therapy, or ABA (Applied Behavior Analysis). These services may be provided through the school system, or they may need to be done at an independent facility.

Therapy and services for the child is important, but research and understanding for the parents is important as well. There are many “parents of autism” support groups available. There are also social skills groups for older individuals. There is so much information available online that it can be overwhelming.

The best place to start (for those based in the U.S.) might be with your local Early Intervention Services. They provide in-home evaluation and therapy services for children under the age of three. The experts there can also provide parents with the next steps.

If that service is not available, a pediatrician or a child psychologist should be able to provide guidance on what to do next. Support groups are available online and through face-to-face meetings. These meetings are a great opportunity for children with autism to interact with other children with autism, as well as for the parents to collaborate and share strategies and successes.

If the child is of school age, then a school meeting should be held to determine the child’s eligibility of special education services, which will detail what services and accommodations the school can provide for that student. Parents may choose to supplement the school services with outside services and therapies, but that is at the discretion of the parent.

Schools mostly focus on how autism impacts a child’s education, so the services they provide will relate to that. Meaning, a child may benefit from speech services, but if his/her ability to learn the educational content is not affected by his/her speech limitations, then the school may determine that the speech service is not needed. In instances like that, outside services may be needed.

Considering comorbid occurrences

There is no medication for autism, but depending on the comorbid occurrences, medication can be used to treat some symptoms. For example, ADHD (attention deficit hyperactivity disorder) is a common co-occurrence with autism and ADHD medication can help alleviate the issues of focus and concentration. Anxiety and OCD (obsessive compulsive disorder) are also common in individuals with autism, and medicines to help with those disorders are available.

Sensory integration disorder, also referred to as sensory processing disorder, is also common in individuals with autism. Individuals with sensory issues may struggle in areas with too many lights or sounds, as well as become unable to cope in crowded, unstructured situations. Certain foods/textures may make them gag and certain clothes/fabrics may make them feel like their skin is on fire.

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They may crave deep tissue massages, or they may not like to be touched at all. They may also engage in sensory seeking behaviors such as spinning or swinging. An occupational therapist can evaluate a child for sensory issues and can provide sensory therapy if needed.

The main thing to remember is to take the whole process step by step, one day at a time. Continue to explore your child’s interests and make sure that he/she is exposed to a variety of experiences and opportunities throughout his/her life. It is important to remember there is no cure for autism, but with knowledge, understanding, and a strong support system in place, an individual with autism has a better chance of growing up with minimal hindrances.

Recommended Books:

For Children

  • A is for Autism by Jennifer Bloink
  • My Brother Kevin Has Autism by Richard W. Carlson
  • All Cats Have Asperger Syndrome by Kathy Hoopmann
  • All Dogs Have ADHD by Kathy Hoopmann

For Parents

  • 1001 Great Ideas for Teaching & Raising Children with Autism or Asperger’s by Ellen Notbohm and Veronica Zysk
  • The Autistic Brain: Helping Different Kinds of Minds Succeed by Temple Grandin, PhD and Richard Panek
  • Disconnected Kids: The Groundbreaking Brain Balance Program for Children with Autism, ADHD, Dyslexia, and Other Neurological Disorders by Dr Robert Melillo
  • The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder by Carol Stock Kranowitz

References:

Lewis, F. (2018). Identifying autism spectrum disorder in undiagnosed adults. The Nurse Practitioner, 43(9). Retrieved from www.tnpj.com

This article was featured in Issue 112 – Understanding Diagnosis & Disorders

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