COPING EMOTIONALLY WITH A DIAGNOSIS
HOW CAN A PARENT possibly deal with the enormity of the fact that their precious son or daughter has been given a diagnosis of autism? How does it affect a grandparent or another child in the same family that their grandchild or sibling has autism?
Initially, a huge wave of different emotions will overwhelm you. Most parents’ first reaction will be a state of shock that their perfect baby and child appears to have developed a seriously disabling condition seemingly out of the blue. It can feel almost as if your child must have suffered a head injury or some other form of brain damage, but without the accident or the illness to cause it. How can it possibly be true? Alongside this reaction may be another of disbelief. Maybe the diagnosis is wrong? Maybe you need a second opinion? A severe disability cannot possibly arise without a cause, can it? Your reaction may also be affected by the manner in which you are told the diagnosis and the length of time it has taken to get to the stage of a final diagnosis. However nicely it is worded and however sympathetic the delivery, for most people it is still a devastating diagnosis to receive. Grief is a very natural reaction and all of us will feel the need to grieve in some way when we first hear the word autism. The extent of an individual’s grief will be dependent on many factors, not least the severity of the autism in the child who has received the diagnosis.
The Stages of Grief
Elisabeth Kubler-Ross explained the five stages of grief in her 1969 book on Death and Dying. Although she was primarily writing about dying, her explanations of grief can be applied to other situations where a great deal of grief is present. The stages progress at different rates according to people’s ability to deal with each stage. Some people never reach the end-stage of acceptance.
Denial
The first stage is denial. You may be in this initial stage on hearing the diagnosis for the first time. This may mean that you may not want to believe the diagnosis that your child has been given and think that it may be a mistake. You may seek a second or even third opinion in the hope that your child may have been misdiagnosed and that someone will tell you it is not really true. Some people will take the diagnosis on board straight away, particularly if there have been obvious signs for a while, so you may pass through this stage relatively quickly. Sadly, sometimes parents will not even acknowledge a diagnosis and will not accept it at all. They may not seek out a diagnosis or may even refuse assessments for their child. They may not wish for help for their child as they may believe that things will change and that their child’s problems are only temporary. There are also some cultures where autism may be seen as a mental disability, which may not be socially acceptable in that culture. So these parents may remain in denial or may try to keep the diagnosis hidden from others around them, which also means they may not do very much to actively help their child progress. If you do not believe a diagnosis or accept that your child has autism, then you are not very likely to accept that they may need some extra help.
The fact that you are reading this book means that you are not in this category, but you may come across other parents on your path in the future who are stuck in the denial stage. This is a very sad place for both themselves and their child to be. Between parents, too, there can be different levels of denial. A mother may accept that her child has autism but the father may remain in denial of it for a much longer time. Both parents may accept the diagnosis of their child while perhaps the grandparents or other key family members are unable to.
Older generations may also have a different attitude towards disability. Autism or ASD is a relatively new condition and there are still many people who do not have any idea of what this actually means. Someone from an older generation may not be willing to acknowledge that it is a definable, lifelong condition. To them, it may seem to be a label to attach to a child who they perceive perhaps as being naughty and who, with the right parenting and discipline, will be fine in a few years’ time. Obviously, if you do not really believe in the condition itself, then how can you believe that a child you know well has it? If families are divided on whether a child even has autism, life can be very, very hard. Hard for those who do accept it and want some help and understanding, and hard for those in denial who are waiting for ‘it’ to disappear. If one parent wishes to pay for therapy or to send a child to a special school but the other parent does not agree, how does a family hold itself together?
Anger
The second stage is anger. This may result in a feeling of life being totally unfair. Why me? Why my child? Who or what has caused the autism? Who can we blame? Are we to blame? Most importantly of all, parents should in no way blame each other. You created a child together. If it turns out that one of you may possibly have some genetic predisposition to any disease or disability, that does not mean it is that person’s fault or, indeed, anyone’s fault for carrying that possibility.
Some parents believe that their child’s autism has been caused by childhood vaccinations. Their anger is therefore directed against the drug companies who produce and endorse these vaccinations as being safe and necessary. The vaccination debate is a huge issue and highly emotive. Such parents may blame the drug companies or the government, but they may also blame themselves for allowing their child to have the vaccinations in the first place. Anger in this case is directed against a corporate being and not an individual.
Some parents will find dealing with their anger harder than others, depending on their individual situations and emotional makeup.
When my twins were diagnosed with autism, I was very sad and very frightened for their future and ours, but I would not say that I was angry. Perhaps I channelled any possible feelings of anger and went into ‘action mode’ instead – indeed, I don’t think I have ever stopped being in that mode. However, when my third son was diagnosed, I was very angry. I already had two sons with quite severe autism. I certainly felt that I didn’t deserve or need another of my children to have the same condition. Although the anger steered me through the whole process yet again, I remained angry for a very long time. Occasionally, when we are going through a rough patch, that anger rears its head again and the questions ‘Why me? Why us as a family?’ return. But, thankfully, the feelings of extreme anger wear off again as whatever situation is causing it, is resolved.
Anger is an awful emotion to live with on a daily basis. A little helps us to galvanize ourselves into action, but living with permanent anger can be very destructive. It can wreck people’s lives so that they cannot even enjoy the things that they should be able to enjoy, destroy relationships and even cause physical problems. Like depression, if feelings of anger are overwhelming and do not dissipate over time, some professional help may be needed, perhaps in the form of counselling. Some people find gentle activities such as yoga or meditation can help them to release anger. Others may need more physical exercise in the form of sports such as running, gym training or swimming to help clear their minds and release stress.
Along with anger about your child’s condition, you may also experience anger with those around you. You may be jealous or envious of other people’s children who do not have the problems your child has. You may feel other people are boasting about their children’s abilities and are not being sympathetic to the problems your own child may have. You may not want to spend time with people who make you feel angry in this way. This feeling may be totally justified (in which case these people are to be avoided). It may, however, be that you feel angry in general at your perception of other people’s lives and find it hard to be happy for them. Protecting yourself from potentially difficult social situations may be the best way to deal with your anger until it lessens and you are able to look at other peoples’ lives in a calmer way.
It may be hard to contain your anger when people around you make comments about your child when they do not realize that your child has a disability. Many children with autism have no outward signs of being different and so you may be judged solely on their behaviour. There is a great deal of ignorance about autism and how it causes behavioural problems in children. If you are feeling stressed and emotionally fragile, a stranger making a negative comment about your child or your parenting skills may cause you to snap and lose your temper. In time, you will almost certainly have to develop a thick skin where other people are concerned or your anger will consume you. Some parents carry cards briefly outlining their child’s condition to hand out to strangers. This avoids confrontation and helps to educate others. If you do lose your temper, a stranger may wonder why you are so ‘touchy’ as they will have no idea of what you may be going through.
Bargaining
The third stage of grief is bargaining. Depending on your own beliefs, you may wish to bargain with a higher power in the form of prayer in order for your child to be made well again. You may offer up aspects of your own life in return for your child not to have autism. A more positive form of prayer would be to ask for divine help so you are able to look after your child and for your child to be as happy in their life as they can be. But if you are bargaining, it is only natural that you will wish for your child to be free of autism and for something to be taken from you in exchange.
You may be able to turn this bargaining stage into a positive whereby your part of the bargain is to do everything you can to enable your child to fulfil their full potential. This may involve self-sacrifice in the form of not being able to work and so reducing your personal income. At the same time, you will increase your potential spending on your child so you will have to sacrifice further things in order to be able to balance your family finances. The bargaining will be that if you do the best you can for your child, your child will achieve the best in themselves. You may well continue this bargain for the rest of your child’s life.
The bargaining may lead you to think that the more you spend on therapy, the better the outcome for your child will be. Sometimes this will be true and sometimes it will not. Bear in mind that it is not always about money, but sometimes about choices and trying to make the right decisions.
Depression
The fourth stage is a hard one: depression. In the case of living and looking after a child with autism, depression can also be compounded by extreme tiredness. In the early years of coming to terms with a diagnosis of autism, depression is very common. It may take a milder form where you grieve in a normal way, which may mean you cry on a very regular basis. It would be quite strange if you did not grieve at all, so you should be gentle with yourself and let yourself cry when you need to. In the early days, you may cry a lot, possibly daily, but with time this overwhelming sadness will lessen. It is important to go through this stage of grieving and not to hold all your grief within yourself. You may need to keep your life confined during this stage. You certainly do not need people trying to cheer you up and telling you that it is alright when to you it is not. Many people cannot cope with another’s grief and will try to jolly you out of your sadness or worse, try to change the subject and distract you. It makes them uncomfortable to see you upset and so they wish to change it. You will quickly come to realize who your friends are that can be relied upon and who will be gentle with you when you need it. Often what you most need is a hug and some words of support, not someone telling you that you should be grateful for what you have.
Feelings of extreme sadness and depression should lessen with time. If these feelings do not appear to be lifting at all, or they become worse and prevent you from leading a ‘normal’ life, then you should seek some professional help. Of course, you may well feel an enormous amount of grief and become depressed in the early days of coming to terms with your child’s diagnosis. This level of grief is natural and should be an acute, that is, a short-term state of being. You cannot sustain high levels of severe emotion on a long-term basis. You need to consider your own well-being as well as that of your child; if you are living with depression, you will not be able to help your child, either. Professional help may come in the form of therapies such as formal counselling or cognitive behaviour therapy (CBT). It may even be necessary to seek medical advice from a doctor if you develop clinical depression.
If you have been sleep-deprived for years, perhaps due to your child having problems with sleep, then receiving a diagnosis of autism for your child may help you and others to appreciate why you are feeling so run-down. Sleep-deprivation is certainly responsible for causing many physical and emotional symptoms. If you have sleep-deprivation, coping with life can seem an uphill struggle every day. If you then add a diagnosis of a lifelong disability for your child on top of your state of sleep-deprivation, life may become too much to cope with. Looking after a child with autism is exhausting, adding all the therapies, appointments, paperwork and everything else to your life is utterly exhausting. It is hardly surprising that some people become depressed. Others may actually be treated for depression with medication when perhaps what they really need is sleep. How wonderful it would be if we could be given sleep on a prescription from the NHS!
Acceptance
The final stage of grief is acceptance. By this stage, you should have accepted the fact that your child has a condition known as autism. The doctors or EPs are correct and you can accept that at this moment in time your child definitely has autism. Having said that, I personally do not believe that you have to accept how your child actually is and all the limitations that may be present as being fixed and unchangeable. In the explanation of this final stage when someone is dying, the acceptance stage means they accept the truth of their mortality and that they are going to die. When we apply this to a child’s diagnosis of autism, I think it needs to be seen as a basic acceptance of the initial diagnosis. I do not agree that you have to accept everything that goes with it. The fact that many mothers do not accept their child’s autism as being final means that they continually fight to change their child’s condition. This fight can take many forms: fighting for therapies, for funding or even to get a diagnosis in the first place. There is potentially so much improvement that can be made and no one should be made to feel that all the symptoms of autism displayed by a child at the time of diagnosis are fixed and unchangeable. There are some people who are so acceptant of their child’s autism that they do not feel a need to fight so hard and are able to love and appreciate their child for who they are. Sometimes, people will say that they would not change their child and remove the autism even if they could, as it is part of who their child is. For the majority of parents, though, we would do anything to remove the negative aspects of our child’s autism. It does not mean that we do not accept or love our children. For me, it is because I love them so much that I wish an easier life for them. So, for those of us fighting to lessen the impact of the autism in our children, perhaps acceptance is never going to be a true state. The removal of some aspects of autism will not change your child’s personality, it will allow their true being to be revealed.
Grief is Unique to Each of Us
It is important to remember that all these stages of grief will progress at different rates for every family involved. The extent of the grief and how it manifests itself will be individual to every person affected. Although the parents are usually the most involved, and it is they who carry most responsibility for a child, there are others who can also be greatly affected by the new diagnosis of a child. A young sibling will not be able to comprehend such a diagnosis and will probably carry on as before, accepting their sibling for who they are. An older sibling may be capable of understanding some of the aspects of autism and so may also go through some of the stages of grief alongside their parents. Grandparents may take the news badly as their future hopes for their role as grandparent have been changed radically. In an ideal world, a grandparent will love their grandchild with a disability just as much as they love their grandchildren who are not affected. As we know, though, you can choose your friends, but not your relatives. Sadly, sometimes the people you look to for support are just not there to give it to you. Their feelings consume them and they are unable to see past their own thoughts to be able to empathize with you and yours.
Living Loss
There is also a state described as ‘living loss’. The term ‘loss’ on its own is usually applied to people who have lost a relative through death. The addition of the word ‘living’ turns the loss into a state of ‘living loss’, i.e. literally, a state of loss while someone is still alive. It can also be interpreted as a state of living with loss on a daily basis. You may have lost the person you believed your child would be in the way that a serious accident or illness would have changed their life, too. You may grieve daily for the child without autism whom you may have known for a few years and whom you now have lost. In their place, you have been given a child who does have autism. You will have daily reminders of how things might have been and how your child might have progressed had the autism not been present. You may rightly feel that you have lost so many things a parent should look forward to in their child’s life. In the early days there may be things you miss acutely, such as your child not calling you ‘Mummy’ or being totally disinterested in opening their own birthday presents. As time goes on, these things will change; perhaps your child will begin to talk and call you ‘Mummy’ in an appropriate way. But there will always be a sense of loss, however great or small, for so many situations and different aspects of life.
Initially, you will be much more aware of what you feel your child has lost than your child will be. A child’s own awareness of their condition may not be apparent for a very long time. So you will be the one living with that sense of loss, of what might have been. This is something that may remain very present or may come and go depending on other factors. You may feel it acutely when your child is among other children who do not have difficulties and who may be achieving significant milestones such as speech. It is also hard when a child manages to catch up with their peers in one area only to realize that those peers have now moved on to the next stage. So you seem to be always in catch-up mode.
Your sense of loss may also be very dependent in the future on how your child perceives their own world. We all wish for a child to be happy above and beyond almost everything else. If your child grows up to be truly happy and content with their world as they perceive it, then this can go a long way to relieving any feelings of loss we may have on their behalf.
Now that they are able to cope better in the world, my boys are intrinsically happy with their lives. They are joyful in what they do and bring joy to those around them. We try our hardest to make their lives as happy and fulfilled as we can, which can be hard work for us to maintain sometimes. If they are not aware of their loss as we perceive it, should we be constantly wishing for what cannot be?
So, are we grieving for them and what they have lost, or for ourselves and what we feel we have lost? It is probably a mixture of both. The very worst sense of grief we feel is when a child realizes what they perhaps are unable to do, but wish very much that they could. Then we feel so powerless in being able to fix it for them.
How Will a Child be in the Future?
Another very natural reaction is to jump ahead in time and try to imagine how life will be in the future. You may meet up with parents who have older children with autism or whose children are young adults. Even if their child had similar problems to your child at the same age, this does not necessarily mean that your child will progress at the same rate. There are new therapies being developed all the time and old therapies are being refined so that children diagnosed now should have a much better prognosis than those diagnosed a generation ago. So a comparison of a young child’s life with that of an adult living with autism may not be a good or fair comparison. Some children may improve greatly, often due to the determination of their parents, but perhaps also due to the degree of autism they have. Some symptoms may lessen and others increase in the future, so a very young child of perhaps three years old at the time of diagnosis can change dramatically over the course of a few years.
I think when my third son was diagnosed I was so upset because I already had two older boys with autism and, of course, that meant that I had a very real vision of his future in front of me. In fact, although he functioned at a similar level to my two older boys at diagnosis, over time his symptoms have lessened much more than those of his brothers. This is despite the fact that they all went to the same school, did the same therapies and even shared the same one-to-one tutors. So, in my case, looking into the future just made me more miserable.
No one can accurately predict the progress any child will make as they grow up. So little is known about the causes of autism, its actual cause may be different in individual families. If no one can prove exactly how and why it happens, how can they then predict how it will progress? Therefore, try to remain positive and believe that all that you do for your child can make a huge difference to their future. Taking each day as it comes is rather a platitude for us and perhaps implies a little too much acceptance. Rather, stay one step ahead and be planning your child’s next achievements. Do not look too far ahead, but far enough to be ready in time for decisions about education, schools and possible therapies.
Getting a diagnosis for your child will have a huge impact on your life and theirs. This is a lifelong condition that you now need to acknowledge. All your hopes and dreams for your child may be swept away in a single moment. All parents want only the best in life for their children, and autism is definitely not part of that ideal picture. There may have been signs that something was not quite right for a while, but it is human nature to be optimistic and to perhaps hope that whatever is happening to your child will resolve itself soon.
Even health professionals may have been telling you there is nothing to worry about; that your child is just a bit later in achieving their milestones than others. Maybe you have twins so ‘of course’ speech will be delayed. Perhaps you’ll hear other well-meant and reassuring words, which aren’t really that reassuring at all. Being a cynic, there seems to sometimes be some reluctance on the part of some health professionals to diagnose a child as it may mean money will need to be spent in support of that child.
Other People’s Reaction to My Child’s Diagnosis
Probably by the time your child gets a formal diagnosis, you will have had some worries about their development. But that does not mean that the diagnosis will not have come as a huge shock and that you should have expected it all along. It does not mean you have had your head in the sand in denial of your child’s problems. It simply means that, like every other parent, you will have hoped that your child will be alright and that nothing too serious is going on. Friends and family may have been trying to reassure you that you are imagining problems and think that you are over-exaggerating about your child’s behaviour. Some of the things your child does may also be things that all children do. For example, jumping up and down in excitement is a common behaviour among children. But most children will only do this occasionally, when there is a very real reason to be very excited. A child with ASD may jump up and down continually and incessantly for no apparent reason. They may jump for hours at a time. So, if you tell someone that your child jumps up and down a lot, they may dismiss you, saying that it is normal for a child to jump. They may believe that you are being anxious for no reason.
Most people are so ignorant still of what autism actually is that unless your child fits their stereotypical picture of autism, they will not see signs of it in your child. You, too, may never have met a child with autism or know a family with a child on the spectrum so you will be equally ignorant of what the condition means. If your child has the more classic, severe form of autism they will be diagnosed before or around the age of three. At this stage, you may not yet have been exposed to the numbers of children that you will later come across in various educational settings. You may still be in that cocoon of post-natal mothers who meet regularly and discuss their children’s progress. Your child may be at a small nursery with limited numbers of children. So perhaps you will have never met a child who has autism. If you have a school-age child, you may well have come across other children at nursery or school who do have a diagnosis of ASD. You will perhaps have more of an idea about what autism might entail. Every child is unique and in every child the symptoms and severity of any symptoms will differ. So, even having met a number of children with autism, you may still not have any real idea of what it may mean to you and your family.
Your child may have started to fall behind and not be achieving the milestones that other children in their peer group have acquired such as speech and language.
My twins were still not talking by the time they were diagnosed, so by then we had started to realize that something was not quite right. But we would never have dreamt that our boys would be labelled with such a serious disability as autism.
Clarification of Disability
It could be that the diagnosis comes as a sort of relief, not a real relief at all, but if you have been worrying about your child for a while and those around you have not acknowledged or taken your concerns seriously, you may feel some relief that you have not been imagining it all along.
When our third son started to display some signs of autism similar to those of his older twin brothers (both already diagnosed with classic autism) everyone including health professionals and family thought we were being neurotic and anxious when we voiced our concerns about him. Again, we were fed reassuring, delaying tactics such as his hearing problems and glue ear. People suggested that perhaps he wasn’t talking because his older brothers weren’t talking very much either at that time. Of course, first-born children talk without older siblings to learn from, but in our case this small fact went unnoticed. It took us a while to get people to take our concerns seriously, perhaps also partly due to the fact that his development had been totally normal until two years of age. If it was hard for us who already had two children diagnosed with autism and who knew the signs, how hard is it for others to be taken seriously?
So, you may take small comfort in the fact that you are not going mad and imagining things and that hopefully people will start to take you seriously at last. You may be very anxious and very emotional but that does not mean that your worries are invalid. It can be very hard to keep your emotions in check during the early stages of diagnosis, some questions may be very upsetting. Some or most of the things you may be told about your child are not what you want to hear so, of course, you will be upset. Sometimes, you need to try and hold your emotions in while you are actually having a consultation with a specialist. Your appointment time is limited and you want to try to get as much as possible from it. If you cry and become very upset, then you may come away not having asked all the questions you wanted to ask. If you can make a list of questions before a consultation, this will help you to maximize your time and it can also help you to remain focused. Inevitably, if you are upset, your mind may go blank and you will only remember what you wanted to ask sometime after the consultation when it is too late.
I have had many appointments where I have held myself together and managed to get as much information as I could, only to burst into tears as soon as I have left the room. I don’t withhold my tears. I just try to manage where and when I cry.
Acceptance by One or by Both Parents
Between parents themselves there can be issues in agreeing together about your child’s problems. Sadly, some parents almost turn a blind eye to what is happening to their son or daughter. They just cannot handle the pain that it causes them to even imagine that there is anything wrong or different about their child. So, one parent may be in denial while the other parent accepts and acknowledges the issues. One parent may believe or wish to believe that autism is a fairly minor problem that will go away if not given too much attention. They may think that perhaps the professionals have got it wrong and everything will be alright in the end. Fathers may not be able to accept that their son may not do the things that they had been planning on doing with them. Of course, parents do not necessarily wish a replica of their own life for their child, but all parents want to be able to offer as much as they had in their own childhoods and ideally more than they had or experienced. The idea that the destiny of you, your child and your family unit has changed enormously is a very hard concept to accept.
If parents are not equally able to acknowledge a diagnosis, then an already difficult family situation can turn into an even worse one. Your relationship with each other is vital at this point as you are the only ones who can really understand what the other is going through. If one of you does not accept the situation, then your relationship will come under huge strain, which is the last thing you need at this point. You need to be able to support one another in caring for your child. If you feel that you are not united in your acknowledgement and feelings about your child’s diagnosis, then try and seek some professional help for your relationship sooner rather than later if you can. Along with all the appointments for your child, it might be very hard to factor in time for yourselves, but in the long run, if you can stay together in a united and loving relationship, it will be so much better for everyone. Some parents get so tied up in their child and their child’s issues that they almost forget about the relationship that they were in with their partner before the diagnosis hit. A couple can grow apart almost without noticing it. When a woman has a baby, it is often said that the baby becomes all-consuming to her and her partner can feel quite neglected for a while, but this does not usually last long enough to cause a problem in the relationship. A child with special needs can take so much of your time and energy on an ongoing basis and can also become all consuming. If you allow this to happen, it may also cause a permanent rift between you and your partner. Your child needs you, but so does your partner, who will also be grieving and perhaps be experiencing shock just as you are, about your child’s future.
Statistically, there is a higher incidence in breakdown of marriage among families with a child with special needs owing to the strain that this situation puts on couples. If you know this in advance, it should act as a warning to be aware of and not as something inevitable. Perhaps if all parents were offered help with their relationships around the time their child was diagnosed, then this statistic could be lowered.
The Shock of a Diagnosis
Again, the fact that most disabilities in children these days are either known before the child is born or usually soon after birth means that autism is one of the few lifelong disabilities that is not apparent early on. This does not alter the pain any parent will have on hearing that their child has a disability, but the fact that it sneaks up on you after a few years of normal childhood development can make the diagnosis even harder to embrace.
Our third son was talking and doing everything he should by two years old when suddenly it was as if a light had switched off and he started to lose all his speech and eye contact and then to withdraw into himself. This was a dreadful shock when we all believed that he was going to be unaffected by the autism his brothers have. We also had to suffer some very cruel comments at the time from people who couldn’t understand why we were so shocked and so upset. They seemed to think that we should have known it was coming. We were told things like ‘Well, it will be easier this time; you know what you have to do.’ In actual fact, it was harder the third time around as we did, indeed, know exactly what we would have to do. Everyone’s circumstances are different, but everyone will feel pain on hearing the diagnosis of autism for their child. The fact that you already have children with ASD does not diminish the fact that another of your children also has it, nor does it make the pain any easier to bear.
Holding onto Hope
Try not to despair on hearing that your child has autism. Do not listen to any negative stuff that people will try to tell you. No one can predict how your child will be in the future, how well they may do and what it is possible for them to achieve. Hope is crucial and you need to remain hopeful for your child’s future. A total cure or recovery may not be possible, but there is a great deal of improvement that can be made and do not allow anyone to tell you otherwise. You will, of course, want to find out as much as you can about your child’s condition and what you can do to help them. There is a great deal of information on the internet that you can access, and it can be hard to know where to start. There are many support groups online and forums, and even blogs from a parent’s perspective. There are also professional and charitable organizations that have websites and offer a wealth of information.
Families have such different experiences and each child is different in the way in which autism affects them, so be careful of what you read and what you believe. It will certainly not all apply to you or your child. People will tell you about someone they know with a child with autism, or that they have heard of a miracle cure. They may recount experiences that do not apply to you in any way. People like to get their information in varied ways. Going online means you can get infinite sources of information from all around the world and at any time of day or night. Forums online also mean that you can ask or answer questions whenever you have a few minutes spare to do so. The difficulty is that it is hard to know which information to trust. Some people prefer to obtain information from others who may already have experience of looking after a child with autism. Their experience may not mirror your own and their child may have very different needs, so this is not always the easiest option it may appear to be. When you have only recently got a diagnosis, although you will want to know more, try to avoid reading too much at first. The internet and all the forums can be overwhelming until you decide which ones resonate with you.
On hearing that my twins had autism, I went straight to the library to see what I could read. The first book I picked up was so negative and said something about parents having ridiculously unreal expectations that their child would ever work in the future. I stopped reading right there and then, and didn’t pick up another book for months. I didn’t get into online forums for many years as I didn’t really have the time or inclination. Other people’s experiences were not necessarily mine. Perhaps in one sense, I didn’t want to know what the future held for my boys. In that way the future was left open to possibility. I am glad that I didn’t try to look too far into the future because in many ways the boys are much more able than I would ever have been able to imagine. They are certainly doing much better than the professionals thought was likely. To me, they are proof that early intervention is key to any child’s future.
You may wish only to talk personally to other parents and carers in the same situation as you are. However, as you will find, autism is very time-consuming and other parents may have limited time in which to talk as they, too, will be very busy looking after their own child. Try to respect this, no matter how desperate you are to talk with them. Some organizations, such as the local branches of the NAS (National Autistic Society), may have parents willing to be contacted about certain issues. Although people who have just been given a new diagnosis for their child are usually desperate for support from other parents, try to remember that other parents have very busy lives of their own. They may have been through the diagnosis stage and have moved on, but they may well be in a new stage that is equally demanding and stressful, such as going to tribunal to fight for the educational provision for their child. Usually, though, you will find other parents will do what they can to help you and will try to make time to talk or offer advice.
Coming to Terms with a Diagnosis
First, before you listen to anyone else, you yourself need to come to terms with the fact that your child has been given a life-changing diagnosis. You may not want to tell your family or friends for a while – at least, not until you know how you feel about it and are strong enough to share your news. You may be part of a very supportive family, in which case you will want to tell them straightaway and gain comfort and support from them. They may help you to come to terms with your child’s diagnosis and be willing to do whatever they can to help you and your child. This, of course, would be the situation in an ideal world, but, sadly, not all families are like this. If you have any fears that your family may not say the right things, try to delay telling them until you feel more able to cope with their reaction. Geographically, you may live a long distance from your parents or siblings, so they will not be able to offer practical support in the form of physical help on a day-to-day basis. Nevertheless, an understanding relative or good friend you can talk to on the phone may be just as valuable.
All your hopes and dreams for your child will collapse as you hear the diagnosis. Even before your child was born, you will have had aspirations of the life ahead for you and your child. Both your life and the life you expected for your child have been altered with that one word: autism. If your child has regressed to reach the point at which they are at, you will be mourning the child your child previously was. It can feel like your child was fine one day and you lost them overnight. They may have been talking and playing, well and happy, and then suddenly all is lost and your child is bewildered and unable to communicate and somehow not the child you knew. It can take a long time for you to accept this. You will keep waiting for the child you knew to return. If your child has not regressed, but has slowly slipped behind in their normal development, the diagnosis will still be a huge shock.
If you can, try your very hardest to stay positive about your child’s future. There is so much you can do; you can make a real difference to the outcome for your child. Do not listen to anyone who tries to tell you that there is nothing much you can do. Health professionals are often negative about expectations for your child. Partly, this is because they do not want to raise your hopes and partly perhaps because they know that funding and accessing what your child needs can be hugely demanding for you. You may not be eligible for funding all the therapies that your child needs. Outsiders may not wish to put extra pressure and stress on you by telling you that you need to do all the things for your child, which perhaps you cannot afford to provide. So, professionals and others may try to keep your expectations low in order to protect you. What you most need to hear is that there is a great deal of hope and that with early intervention your child’s prognosis can improve enormously. Total recovery is probably not a realistic expectation but you will be surprised over time what you and your child can achieve.
But … you will only be able to help your child if you believe that you can. You are the most important person in your child’s life and you can make a huge difference. Even if you don’t have the available money for many of the therapies, there are ways of accessing funding and the help that you need.
Sometimes, getting on with helping your child as soon as you can helps you to deal with the emotional side of things. You may almost become too busy to sit and dwell too long on how you feel. Knowledge is empowering, the more you know and understand about your child’s condition, the better you will be able to help. If you have a bad day, try not to be too hard on yourself; we all have bad days. If you like to read, try to find some uplifting stories of children who have improved way beyond their parents’ original expectations. Perhaps join an internet support group where you can ask questions from people who have been through or who are going through right now what you are going through. There may be a local support group for parents whose children have autism. Try to get in touch. Other parents will give you hope and often offer more support than your own family can as they understand your situation so much better. They may also be a good source of information and save you a lot of time researching everything on your own.
Family Views
In the way that some parents are not able to accept their own child’s diagnosis of autism, so, too, grandparents may be unable to understand their grandchild’s condition fully. For years, they may have blamed your parenting skills for your child’s behaviour as inevitably your child will have some behavioural problems. To outsiders, the way your child behaves will often be termed as ‘naughty’ and an indication that you have let your child get away with things and have not disciplined them properly. When you learn more about your child’s diagnosis and the fact that these behaviours are not your fault, you may feel some relief. Your parents and others, however, may still think that somehow you should be able to control your child better and that the diagnosis of autism is almost an excuse for bad behaviour. It is very hard for any parent to be criticized for their parenting skills by their own parents and even harder to take when you know that it really is not your parenting skills that are to blame.
I am not alone in finding it so much harder to be judged by a member of my family than by a stranger. Somehow you expect your family to understand your child’s condition and why they do the things that they do. It is much easier to be criticized by a stranger you can dismiss and try to forget about than it is by your own family with whom you have to maintain a relationship.
Grandparents suffer in their own right, too. They have expectations of being a grandparent and all the joy that entails. They have hopes for your children, maybe hopes for things that you or your partner did not succeed in doing and which they now wish for their grandchild. They may suffer the loss of not being the grandparent they expected to be, which is similar to the loss you experience in not being a parent in the way that you expected or imagined you would be. Of course, they are still your child’s grandparent and you will hope that they will continue to love your child in the same way that you still love your child. Many will manage this and be able to adapt to the new reality. Sadly, some will not adapt, mainly because of their own personalities and expectations. You may find that if they have other grandchildren without disabilities or problems that they will lavish more care and attention on them and back away from your child. Of course, this rejection will hit you doubly hard as these other grandchildren will also be part of your own family and you will have to witness this favouritism.
Do not be too disheartened by other people’s attitudes. You will meet some wonderful people along the way while doing your best for your child. There are many teachers and therapists who really do want to make a difference to your child’s life. Not many people work in the area of special needs just because they need a job or for the financial rewards; most are doing it because they care. You may also be lucky to find volunteers and charities who will help you and your child unpaid. Having a child with special needs can be expensive enough as it is, so anyone offering their services for free is to be appreciated.
Try to stay positive and remain confident that you can truly help your child. There is a lot of research in progress and new ideas for both medical and educational help are being developed all the time. You really do not know how your child will develop as he or she grows up and you should not place any limits on what progress they can make. No professional will be able to predict accurately how your child might be in five or ten years’ time or even how they will function as an adult with autism. It is even hard to predict whether a child will acquire functional language or what level of communication they will be able to reach. The fact that you do not know how far your child could progress will keep you motivated to do all that you can to maximize their potential. There are so many different therapies available now to help your child, your only obstacle should be how to fund them and which ones to choose.
Once you have a diagnosis and you have accepted it, you need to get to work!