How parents can deal with a new autism diagnosis
Finally getting a diagnosis of autism spectrum disorder can be a heartbreak, a relief, and an achievement for parents. Many parents and caregivers may see symptoms in their children for some time before the children are diagnosed with autism spectrum disorder, according to a recent University of Alberta research study.
Early symptoms of autism
- Communication and language deficits such as being non-verbal or using stereotypical and repetitive phrases
- Abnormal speech such as problems with pitch, stress, and intonation
- Difficulties in social interaction such as not making eye-contact or not understanding turn-taking
- Are unable to make friends because they cannot relate to peers in a positive and reciprocal manner or adjust to the demands of social situations
- Preoccupation with certain hobbies, interests, or activities
- Overly dependent on routine and may become severely stressed if their schedule is not followed to the letter
- Seek comfort when stressed in abnormal ways
- Behavioral problems such as self-injury, tantrums, screaming
- Abnormal responses to sensory stimulation such as being unable to tolerate touch, being fascinated with spinning objects, wanting to smell everything, and/or spending hours rocking
- Intellectual functioning and development varies from severe impairment to being able to function in the above-normal range
- Difficulties in daily living activities such as eating, sleeping, and toileting
- Being picky eaters
- Gastrointestinal problems
The organization Autism Speaks says that many doctors ignore and dismiss the concerns of parents who suspect that their children may have autism. This situation can delay interventions such as therapies that are crucial for a child’s development for up to two years.
Once the diagnosis is real, however, parents may feel overwhelmed by strange emotions and wonder what steps to take next. Each child with autism is on a unique journey with their own characteristics and needs, but there are some common steps that many parents take when confronted with this diagnosis.
Here are some tips for parents or caregivers of children with a recent autism diagnosis from parents of autistic children and autism experts.
Delay any decisions for a few days
No matter how long that you believed that your child may be autistic, the reality of the diagnosis can stir up a lot of emotions. You may experience grief, anger, and a fear of what the future holds for your child. You need a few days at least before you can deal with the implications of the diagnosis and seek treatment for your child.
Interventions should begin as soon as possible to ensure that autistic children can develop the life and social skills they need to lead successful lives. You will need some time before setting a course logically rather than emotionally for your child.
Get some alone time with your partner
The two of you will need time to talk about how you feel or to discuss practical issues. The discussion should be held in a place without distractions where your child cannot listening to what is being said. You will need to decide some crucial things together, such as what family members and other people should be told about the diagnosis initially.
Do not focus too much on the future
You can drive yourself crazy wondering if your child will speak, develop social skills, or be able to live on his or her own. Try to focus on short-term goals and the issues of the here and now. Try to enjoy being with your child today and celebrate their accomplishments.
Put away the checklist
All parents have expectations of their children, but parents of children with autism may get caught up by a checklist of problems to be solved. Parents should focus on the child and not the child’s deficits.
Decide on a single, accessible place for paperwork
A lot of paperwork will accumulate quickly. It should be kept on one area that is easy to access. The paperwork could be kept in binders for reference and can easily be taken to meetings and medical consultations. You will need a financial plan as we;; and may need to a consult a financial planner. Someone who knows about disability planning can provide guidance through the extra financial stresses that will be involved.
Record all interactions
Records should be kept of every interaction you have with doctors, therapists, schools, and other professionals, including informal meetings in a hallway. Keeping this information will give you a clear picture of your child’s progress. Even a casual comment by a teacher could point out a problem or provide an idea that could spur the child on in their development.
Beware of quack treatments
There are many different types of ineffective treatments that are a waste of time and money, and may even be harmful. There are several red flags that they are a rip-off. First, quack treatments tend to make unrealistic and grandiose claims of “miracle cures.”
There is usually no scientific evidence from respected research organizations to back up the glowing testimonials. There is no quick fix for autism. Only work with qualified medical professionals and therapists.
Find services and know your rights
Getting services can be difficult and time consuming. You need to find out your child’s rights to services and pursue them. Local support or advocacy groups can help. These groups can be a great source of information on local resources such as camps or autism-friendly professionals such as dentists or hairdressers.
Support is also available online, but unfortunately, online resources may be full of misinformation or promote pet remedies and dubious “miracle cures.”
Autism-related associations as well as medical professionals can provide information about what treatments work and which do not. The organization Autism Speaks offers a 100-day tool kit to help families navigate the first 100 days after the diagnosis of autism.
Hold on to hope
People with autism can pursue higher education, find employment, and lead full and fulfilling lives. Some children do outgrow the autism diagnosis but still struggle with some of the symptoms. Medical professionals are actively exploring new therapies and treatments, providing hope for the future.
© 2015 Carola Finch