The Parent Journey

In this presentation we will deal with the parents journey. 

Autism is a life enduring condition and a diagnosis of autism will impact the family in many ways and on many levels. 

The parents of the child will have gone through a process of diagnosis which can take a long time to complete. 

No matter how you prepare for the results of the diagnostic process it is very difficult to deal with hearing the word autism on an emotional and practical level. 

This is the start of an emotional rollercoaster for parents and the rest of the family that will last the rest of their lives. 

Anna’s son Aaron was diagnosed with autism; 

Aaron was our second child and we could see that he was not reaching his developmental milestones as quickly as his older sister. We had been preparing ourselves for a diagnosis of autism but when it finally came, it was like all the hopes and dreams we had for our family life had been snatched away. 

We were now presented with this new reality that we knew nothing about. I was crushed and frightened not knowing what lay ahead of us. 

The biggest challenge for parents is how to come to terms with the reality that their child has autism. 

The process of acceptance takes time and a period of adjustment is required for the whole family is required for the whole family as they try to plan a way forward. 

During this period parents are emotionally vulnerable and support of other family members and friends is hugely important. 

This adjustment period can be difficult, as your hopes and dreams for your child have now changed. 

Parents react differently, 

All parents need time readjust and refocus as they come to terms with the diagnosis. This process can start immediately or be delayed as one of both parents immerse themselves in other things. 

Some parents are relived they finally have a confirmed diagnosis and can now plan on how to deal with what comes next. 

Some parents focus very quickly on securing services and entitlement as they immerse themselves in doing things to help them deal with the diagnosis. 

Some older children and adults who have high functioning autism and did not receive a diagnosis in their early lives can be relieved to finally receive a diagnosis that makes sense of how they had been feeling for many years. 

Regardless of where you start in the process of acceptance, the vast majority of parents will experience the emotional impact of an autism diagnosis at some stage. 

It’s ok to feel and share these emotions. 

Please visit the parent wellness section of this site to learn more. 

During this time parents and families need a period of adjustment to come to terms with the diagnosis and will experience some different emotions. 

These include: 

• Shock 
• Sadness  
• Anger 
• Denial 
• Loneliness 
• Acceptance 

Research has shown that family relationships come under more pressure when there is a special needs child as both the emotional and financial pressures can be more acute. 

Parents who are normally the primary carers can suffer with both mental health issues like physical and emotional exhaustion and stress. 

Other extended family members such as grandparents, sisters, brothers and other family members are also needed to give both practical and emotional support. 

There will be lots of joy and challenges along the way so it is important to share how you are feeling with others. 

Talk to your partner, friend, a family member, another parent. 

Parents may seek out the support of other parents in the same situation through parent support groups. 

There is real power in sharing experience.  

There are many wonderful, confidential and non-judgemental organisations in the personal wellness and mental health area, don’t be afraid to reach out. 

Its ok to feel whatever you are feeling no matter where you are on your journey of acceptance, but don’t let these feelings consume you. 

There is real power in sharing your experience. 

If you really are struggling, don’t struggle alone.

Join a parent support group and talk to other parents. 

Get some professional help if you feel you need it, Psychologists, Counsellors, Psychotherapists and life coaches can help. 

There is real power in sharing your experience.  

Denial can be an issue, 

It is common for a parent to refuse to accept the diagnosis. 

This can cause internal friction within the family unit and can delay or hinder the development of the child. 

It can take a long time for some parents to come to terms with the fact that their child has autism. 

All autism related to research shows the early intervention is vital for a child with autism. 

Parents must very quickly focus on the practicalities of accessing these services. 

Parents and family members must often speak for people with autism as they are unable to do so themselves. 

Speak to you child, because remember, 

Just because I cant speak for myself doesn’t mean I don’t have anything to say 

Parents and families must now learn what they can about autism and other related matters. 

These include things such as educational supports, entitlements and services. 

They must do all of this while still dealing with the emotional impact of the diagnosis. 

As we have learned in earlier modules, autism is a lifelong diagnosis. 

The parents and family members have to deal with the short term and long term needs of the person with autism. 

Understanding and empathy is also required of people dealing with parents as they navigate their way through the process of securing services and entitlements. 

Siblings speak about how they can be ignored as the focus shift to the child with autism. 

They also have to deal with the reality of having a special needs brother or sister and the impact this will have on their life. 

Parents are advised to make special time available with their other children to ensure that they are getting the practical and emotional support they need as they grow up. 

Some sibling speak of how they sometimes feel embarrassed by the behaviour of their brother or sister, particularly in front go their friends and peers. 

Other siblings of people with autism speak about missing out on things that other families do such as holidays, meals out and day trips. These types of activities must be planned by the families of people with autism and often get postponed or cancelled due to issues outside of the siblings control. 

But, a wonderful protective bond can often develop between a child another special needs sibling as they accept that their brother or sister is different and love them all the more for that reason. 

A parent in the family may have to give up work to care for the child with autism. 

This has both financial and practical implications for the whole family. 

Parents must continually focus on the needs of their child with autism and adapt their family life to cater for those needs. The majority of planning daily activities will focus on the needs of the child with autism. 

Everyday tasks must be planned in advance and as many children with autism are reliant on routine and find change very difficult to manage.  

As the majority of people with autism have difficulties with social interaction and communication many need help to manage their affairs. 

It is the parents who normally apply for services, treatments and entitlements. 

Parents and carers will also take responsibility for planning and sourcing appropriate care services once the person reaches adulthood.  

The parents and families of children with autism are hugely proud of their child as he or she deals with the difficulties that autism presents to them every day of their lives. 

Parents and families celebrate the achievements of the child or sibling as they would with any other family member and a wonderful bond can develop within the family group as they face the future together. 

The family will adjust their lifestyle and expectations and make many sacrifices to allow their child or sibling to reach their full potential and have a fulfilling and rewarding life. 

The commitment of the family and extended family is an empowering thing for the person with autism as they are certain of being loved and accepted for who they are. 

The financial burden on the parents and families of children and adults with autism can be very substantial.  

Many families choose to pay privately for intervention and therapies as state services have long waiting lists and service provision can be sporadic and difficult to access. 

Parents and families must also plan for the long term financial future of the person with autism. 

What happens when I’m gone? 

The question that consumes every parent of a special needs child or adult. 

Every parent of a special needs person worries about the future of their child. 

This process can be hugely stressful for parents as they try to put a plan in place for their child when they are no longer in a position to look after them. 

Of course its important to plan and take all the steps necessary to ensure a happy and safe future for your child. 

But remember when you are worrying about the future, you are missing out on all the wonderful things that are happening in the present.  

Many parents describe a special needs child as a gift, a very unique bond forms. 

Families always see beyond the diagnosis and focus on the abilities and not the disability, and love that person for who they are.