Adjusting to an Autism Diagnosis

Autism spectrum disorder (ASD), is a serious neurodevelopmental disorder that impairs a child’s ability to communicate and participate in social interactions. It can also include repetition in behaviors, interests and activities, and can lead to major impairment in social and occupational functions, among others.

ASD is defined as a single disorder, containing several disorders that were once separate—autism, Asperger’s syndrome, childhood disintegrative disorder and others. Symptoms vary greatly along the autism spectrum and often becomes noticeable at a young age. There is no single known cause, though genetics and environmental factors may play a role.

For both people with ASD and their families, the diagnosis and adjustment process can be difficult. Here are some things to know about ASD and coping as a family.

Diagnosing Autism

If your doctor notices initial signs of developmental delays during normal checkups, they’ll likely refer you to a specialist to check for ASD. Because of how widely ASD symptoms and behaviors vary, there is no standard test used for diagnosis—the specialist might do a few things:

Observe the child and ask you how social interactions, communication skills and behavior have developed and changed.
Give tests on language, speech, development and social interaction.
Include other specialists.
Present structured interactions to the child and score their performance.
Recommend genetic testing to identify a possible genetic disorder.

For a positive diagnosis of ASD, a child must meet symptom criteria published by the American Psychiatric Association. There are two primary areas here:

• Impaired social and communication skills: These include problems across multiple situations with social and emotional give-and-take (such as basic conversations), nonverbal communication used in social interaction (eye contact, body language, hand gestures, etc.) or relationships (developing, maintaining and understanding them).
• Restricted or repetitive patterns of behavior: Odd or repetitive movements, insistence on sameness or rigid routines, interest in abnormal objects or topics (or parts of objects), narrow areas of interest or issues with sensitivity to sensory input like pain, temperature and sounds (either lack of sensitivity or extra sensitivity).

Finding Treatments

With the right treatment and support, children with ASD can still flourish and grow. The right treatment varies for every child, and the goal is to match potential and specific needs with strategies likely to help them in these areas. A few areas to look at include:

Nonmedical interventions: These focus on introducing new behaviors or reducing inappropriate actions often through behavior reinforcement, addressing a single issue at a time.
• Educational therapies: Some children with ASD respond well to highly structured educational programs, often including a team of specialists to improve skills.
Family therapies: Parents, siblings and other family members can learn how to interact with children with ASD in positive ways that promote social skills and manage negative behaviors.
• Medications: No medication can cure or improve the core signs of ASD, but certain ones can help with symptoms. Antidepressants help with anxiety, and antipsychotic drugs can be used for severe behavioral issues.

In all ASD cases, your specialist will work closely with you to determine the right unique treatment for your child.

Family Coping

Every member of the family can be affected by a child’s ASD diagnosis. Managing stress is important, as is getting appropriate sleep and nutrition. Helping siblings understand what’s happening and deal with their own related stress levels will get everyone on the same page. Most siblings cope well and can be a real help in managing ASD.

Planning for the Future

Long-term planning for a loved one with autism includes a care plan that’s backed by a sound legal and financial foundation. This special needs estate plan is for situations in the future where you might not be able to assume a caregiver responsibility. Items that should be addressed in a special needs estate plan include:

Guardianship: Defining whether the child will be capable of making their own decisions once they reach age 18 is important, as is establishing yourself as legal guardian if they are not.
Benefit assessment: For financial security and government assistance.
• Special Needs Trust (SNT): For certain government benefits, assets placed in an SNT will ensure that benefits are applied.
Letter of Intent (LOI): This is a roadmap providing guidance to guardians, trustees or any others who may care for your child if you are unable to.
Powers of Attorney: If guardianship is inappropriate, an attorney can still help with less intrusive alternatives like naming agents responsible for certain decisions in the child’s life.
• Will: In the case of your death, a will needs to contain wishes regarding your property plus any care requests.

If your child is showing signs of autism, or if you need any assistance or information on diagnosis or adjusting to life with ASD, speak to your doctor to get specific instructions dealing with your child’s condition.