Arguably the most traumatic time associated with Autism is the initial diagnosis. The period before diagnosis can be extremely stressful as you worry constantly if your child has autism. Most parents would have been on the internet checking for the signs and markers for autism and then comparing their child’s behaviours for similarities. This is useful to a point but to get a confirmed diagnosis of autism you need to get a professional assessment. Generally, parents with concerns about their child’s condition are referred by their GP or Paediatrician or to their local Autism Service Provider for an assessment. The majority of Service Providers have a waiting list so in some areas of the country it can take up to a year for the diagnostic process to begin. Normally you will be added to a waiting list. The assessment team will normally comprise of some or all of the following professionals – Speech & Language Therapist, Psychologist, Occupational Therapist and a Social Worker.
Due to the waiting times and the importance of the Early Intervention window for young children some parents who are not prepared to wait for long periods of time for a diagnosis choose the private route. A private registered Physiatrist or Psychologist can diagnose autism but this route is expensive and you should always agree a full cost for the diagnosis prior to proceeding. If a child is already in the educational system a confirmed diagnosis of autism will allow you to access resource teaching hours and apply for an SNA (Special Needs Assistant) if one is required. A private diagnosis will also allow the parent(s) of the child to apply for such allowances as Domiciliary Care Allowance, CarersAllowance and the Incapacitated Child Tax Credit.
It is important to check that the private diagnosing professional is recognised by the HSE and other overlapping Government Departments so that you can begin to access services such as an appropriate educational placement or the Home Tuition Grant from the Department of Education. Even if you have a private diagnosis you will still need to be seen, assessed and diagnosed by the state service provider. The reason for this is that normally the service provider will provide the services such as speech & language therapy and occupational therapy for your child post diagnosis. Again there is normally a waiting list for these services. Once you have received a confirmed diagnosis of autism things will change on a practical level as well, your child now needs additional help so you need to focus on getting that help as quickly as possible.
Suddenly, with a confirmed diagnosis of autism, everything changes. Parents and family members can react differently to the diagnosis. Some may start a grieving process while the other may go through an angry phase or non acceptance that their child has autism. This can create tension within the home so it’s important that the issue is discussed as openly as possible and that you focus on the child’s needs. If you need additional help in coping with the diagnosis in the early stages it is important that you get it as quickly as possible. There are many autism support groups throughout the country and it can help to talk to other parents who are a little further down the road than you are. There are professional councillors who can help you to deal with the issues that you are facing and assist you in navigating what is a very emotional time. We at Shine will be happy to help or put you in touch with a support group in your area.
A diagnosis of Autism can have a huge affect on siblings also. The main focus at home, following a diagnosis, is the child with Autism and this can create a “left out” feeling for brothers and sisters. It is understandable that once a diagnosis is received families tend to spend most of their time and energy trying to deal with this issue. However, this can affect the family unit, particularly other siblings so try where possible to address this issue. Make time for your other children where it is your “special time” together. Older children and adolescents are very tuned in to what is happening in the home and can be equally affected by their sibling’s diagnosis. It is important that they understand what is happening and often a simple brief explanation of their brother/sister’s diagnosis of autism will help them deal with the upheaval in the home. If possible involve them in helping in some way (tiding up toys or playing with their sibling) so that they feel that they are making a positive contribution. Do not focus your anger and frustration on your other children as they can often suffer from deferred anger from parents who are tired and struggling emotionally.
Autism affects an entire family and, once an initial diagnosis is received, it is recommended to speak to somebody who has been through this situation. It’s important that you talk to somebody just to say the words out loud – speak to somebody you are comfortable with – a family member – a friend – a professional.
Talk to us at Shine we can offer practical advice on where to start.
It’s not easy to hear the news that your child has autism, and realise that your life will be utterly different than you had expected it to be. Daily life with a special-needs child presents many unique challenges. How do you come to terms with the fact that your child has autism? How do you cope once you get over the initial phase after diagnosis.
You are never prepared for a diagnosis of autism. It is likely that you will experience a range of emotions. It is painful to love so much, to want something so much but you must take a practical approach as you would in overcoming other challenges in your life. You want your child to get better so much you may feel some of the stages commonly associated with grieving. You may “revisit” these feelings from time to time in the future. Part of moving forward, is dealing with your own needs and emotions along the way.
Immediately after the diagnosis you may feel stunned or confused. The reality of the diagnosis may be so overwhelming that you’re not ready to accept it or you initially ignore it. You may also question the diagnosis or search for another doctor who will tell you something different.
Sadness or Grief
Many parents must mourn some of the hopes and dreams they held for their child before they can move on. There will probably be many times when you feel extremely sad. Friends may refer to this as being “depressed,” which can sound frightening. There is, however, a difference between sadness and depression. Depression often stands in the way of moving forward. Allowing yourself to feel sadness can help you grow. You have every right to feel sad and to express it in ways that are comfortable. Crying can help release some of the tension that builds up when you try to hold in sadness. A good cry can get you over one hurdle and help you face the next.
With time, your sadness may give way to anger. Although anger is a natural part of the process, you may find that it’s directed at those closest to you – your child, your spouse, your friend or at the world in general. You may also feel resentment toward parents of typical children. Your anger may come out in different ways – snapping at people, overreacting at small things, even screaming and yelling. Anger is normal. It is a healthy and expected reaction to feelings of loss and stress that come with this diagnosis. Expressing your anger releases tension. It’s an attempt to tell the people around you that you hurt, that you are outraged that this diagnosis has happened to your child.
You may go through periods of refusing to believe what is happening to your child. You don’t consciously choose this reaction; like anger, it just happens. During this time, you may not be able to hear the facts as they related to your child’s diagnosis. Don’t be critical of yourself for reacting this way. Denial is a way of coping. It may be what gets you through a particularly difficult period. You must, however, be aware of that you may be experiencing denial so that it doesn’t cause you to lose focus on your child’s treatment.
Try not to “shoot the messenger.” When someone, a professional, a therapist or a teacher, tells you something that is hard to hear about your child, consider that they are trying to help you so that you can address the problem. It is important not to alienate people who can give you helpful feedback and monitoring of your child’s progress. Whether you agree or not, try to thank them for the information. If you are upset, try considering their information when you have had a chance to calm down.
You may feel isolated and lonely. These feelings may have many causes. Loneliness may also come from the fact that in your new situation you simply don’t feel you have the time to contact friends or family for company or that, if you did reach out, they wouldn’t understand or be supportive. In the items that follow, we have some suggestions for taking care of yourself and for getting the support you need.
Ultimately, you may feel a sense of acceptance. It’s helpful to distinguish between accepting that your child has been diagnosed with autism and accepting autism. Accepting the diagnosis simply means that you are ready to advocate for your child.
The period following an autism diagnosis can be very challenging, even for the most harmonious families. Although the child affected by autism may never experience the negative emotions associated with the diagnosis, parents, siblings and extended family members may each process the diagnosis in different ways, and at different rates.
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