Note: members of the autism spectrum disorder (ASD) community have different preferences on the use of person-first (“person with ASD”) and identity-first (“autistic person”) language. For this article, we have used a mix of person-first and identity-first language.
Receiving an official diagnosis of autism spectrum disorder (ASD) can be overwhelming. This page explains common reactions to a diagnosis and how to access support for yourself.
What to expect after an ASD diagnosis
Your child is not any different the day before or after a diagnosis of ASD. They are the same child you have always known and loved, with many unique characteristics and strengths.
The more you are able to understand how your child’s brain learns and functions, the better you will be able to support your child. There are many health-care professionals honoured to work with children with ASD and their families to help them adapt and thrive.
Each family member may react differently to a diagnosis of ASD. Initial feelings of disbelief, worry, sadness and loss are not uncommon. Sometimes, a feeling of relief comes from finally understanding the reason for your child’s difficulties. Receiving any diagnosis can be overwhelming. A lot of parents/caregivers describe the journey toward receiving a diagnosis of ASD as lengthy, tiring and often confusing. Even though many parents say they knew all along that their child fit somewhere on the autism spectrum, the official diagnosis still marked an unforgettable moment in their life.
Lengthy assessments, tests, and other medical appointments may lead to increased stress in the family. Fear of the unknown, uncertainty about the future, and a general sense of emotional overload may be common following a diagnosis. Each family member, depending on their beliefs, experiences, and understanding about ASD, will cope differently. Time is needed to fully grasp what the diagnosis of ASD means for your child and family.
Parents often feel pressured to find the appropriate treatments for their child as quickly as possible. The importance of early intervention is stressed by health-care professionals. There is a lot to understand about ASD and even more to understand about different treatment options and how to obtain the best support for your child.
Talking to other parents, joining a support group, or speaking with a counsellor who has experience with ASD can be helpful when trying to find services. It can also help to talk to a counsellor if you are finding that your feelings are making it difficult to get on with day-to-day life. Having a child with ASD often means that every hour can seem like it is filled with something to be done, people to talk to, and services to put into place. It can feel as though you are moving through life on automatic pilot. Taking the time to talk to others can give you the time you need to make sense of your feelings.
After a diagnosis, you will be thinking what to do next and where to go from here. Here are five things you can do to start helping your child:
1. Learn about ASD
One of the most important things you can do is to learn about ASD. Nobody knows your child the way you do. Through the years, you will need to speak up for the needs of your child. The more you understand ASD, the more you will know the best ways to help them.
2. Develop the support network that you need
Many parents find it helpful to get support to help them find the services they need. Some parents have one person that they can talk to and solve problems with. Some parents join a support group and meet with a number of parents to talk about their situation. Choose whatever feels right for you.
Other parents of children with ASD can help you to understand how the school system works and how other services work in your community. Remember, you are not alone.
3. Focus on your child’s capabilities too
It is easy to think only about your child’s difficulties; however, it is important to concentrate on your child’s capabilities too. Look at the things they do well and build on those skills. Celebrate your child. Meet your child where they are at. Know what makes them smile, and join them in that fun. Your acceptance and encouragement are essential to their feelings of worth.
4. Set aside time to spend with your other children
Many parents have difficulty balancing the needs of their child with ASD with the needs of their other children. These siblings may have a lot of feelings about having a sibling with ASD. They may feel frustrated, confused, embarrassed, guilty, or jealous. They may also feel proud, compassionate, and loving toward their brother or sister. They are often wonderful playmates and role models, but they also need special attention for themselves.
Many parents find that setting aside a special time for each other child is very important. It can help these siblings feel included when they may otherwise feel left out. It can also give them a chance to talk about their feelings. Or they can simply enjoy spending time on their own with their parents.
5. Look after yourself
It is easy to concentrate all your attention on the needs of your child and your family. Do not forget your own needs in the process. And do not feel guilty when you do take time for yourself or a partner.
Draw on the supports that you may already have. Work on finding other supports if you need them. Looking after yourself is often overlooked, sometimes almost impossible, but a very important part of caring for your child.
Follow-up care/clinic appointments
Children with ASD will require different supports at different times. Each child will have their own unique journey. Caregivers can be supported to understand how, when and where to access supports over the short and long term. This is often done through the child’s pediatrician, or through a service navigator or social worker.
Therapeutic supports and other services
Although some skills may not come as naturally to children diagnosed with ASD, there are many therapies and resources to help families and their children.
Often children with ASD benefit from a multidisciplinary team including:
- Speech language therapists (SLP): Can help with language development, speech concerns, and social skills development.
- Occupational therapists (OT): Can help support daily living tasks, self-regulation, sensory challenges, feeding difficulties and fine motor skills.
- Behaviour therapists: Can help understand what may be causing behaviours of concern and an approach to manage these behaviours.
- Social workers: Emotional support and supportive counselling for family members. May also support with resource navigation.
- Case navigator: Help you find local resources and connect you with available funding sources.
- Psychologists: Can provide cognitive assessments and therapeutic services such as counseling, and cognitive behavioural therapy (CBT).
- Pediatricians: Can support assessment and management of co-occurring medical and mental health conditions.
- Psychiatrists: Can support assessment and management of co-occurring mental health conditions.
- Daycare/school supports: Families are encouraged to share the diagnosis with their school and discuss how to best support their child and explore available resources.
- Funding: There are numerous sources of funding that can come to families after an ASD diagnosis. Your social worker or case navigator often help you access and apply accordingly. It is also important to check if you have private health insurance, as your family may have funding already available to you.