A parent’s guide to autism

As a parent, you love your child, and you want the best for them. So if you are told by a medical professional that they are autistic, it may come as a shock and cause you concern. The first thing to know is that autism is not an illness or disease. It is not life-threatening and receiving a diagnosis in no way changes who your child is. In fact, a diagnosis of autism can give you a major insight into how your child thinks and behaves.

Autism is a difference. Autistic people are not better or worse than others, just different. Autistic brains operate in a different way and so will often lead autistic people to react to something in what seems an unusual way to you.

Autism is not a negative condition. While autistic people can struggle in some areas of life because the world is not set up for how they think and function, autism often brings many gifts and abilities which can greatly enhance life.

This resource is designed to help parents who have just received a diagnosis of autism for their child through taking in what this means and the first steps to take in doing the best for their child.

How to process the diagnosis

There is no right or wrong way to respond to a diagnosis of autism for your child, but it is not bad news. It is an explanation of how your child’s brain works and why they are as they are. This is a beginning, not an end, and a way of getting to know your child better.

If you are shocked and anxious, perhaps feeling that there is something wrong with your child, this is not the case. Autism has been portrayed for many years as a problem and entirely negative condition, but this is not true. Many autistic adults live successful and fulfilling lives and would not want to be any other way. They are proud and happy to be autistic.

When you first receive the diagnosis for your child, give yourself time to adapt to the news and process it in the way that you know works for you. You may want to immediately read as much as you can about autism to learn what this means for you and your child. If this is you, do not overwhelm yourself. You have time to learn and work things out. Or maybe you need to just mull it over for a while before doing anything else. Again, if this works for you, then do that.

If you feel angry with the diagnosis or situation, there is nothing wrong with that either. But be sure to be angry only with the situation or the challenges, not with you child or with someone else. Try to channel your anger into positive action.

It is also possible that the diagnosis has come as a huge relief to you. It may confirm what you thought about your child, and it will make it easier to access the help and support that you and your child may need.

However you choose to deal with receiving the diagnosis, reach out for help if you need it. You do not have to face this on your own.  Many other parents have also faced this situation and know exactly how you feel and the questions you may have. Be kind to yourself. You and you child are not alone, and you will get through this.

How to share the information with your child

A key decision to make is when to tell your child that they are autistic. It is probably best to wait until they are old enough to have some understanding, and the age at which this is the case will vary according to the child.

When you do decide to tell them, then think about who should be present, and when and where to have the conversation. It may be intimidating to have more than a couple of adults present, but if they have another relative to whom they are particularly close it may be helpful to have them there for added support and comfort.

Autistic people often find change very difficult and can easily be distracted by surroundings, so choose somewhere familiar and comfortable where you will not be interrupted, at a time of day when your child is at their best and not tired or irritable.

In terms of delivering the message itself, it may be good to talk about differences and other differences between people. Try not to portray being autistic as in any way negative, in the same way that you would not tell your child that there is anything wrong with being a bit shorter than their friends or having an unusual hair colour.

Nothing about the diagnosis changes who your child is, how wonderful they are and how much you love them and always will. Keep this in mind and try to reinforce it both when having the first conversation and moving forward. Make it clear that they are not ill and do not need curing, but that there may be some things that they find easier than their friends and classmates, and others where they may need a bit of extra help. There is nothing wrong with this – we all need help with some things!

Finally, do not overload your child with information. Tell them a little and give them plenty of time to digest it and to ask questions. Autistic people often need a while to process important information, and your child may suddenly start asking questions some time later. If you cannot answer a question, it is fine to say that you don’t know, and that you will find out together – do not make up an answer that may cause problems later!

If you have other children, you should also think about how and when you tell them that their sibling is autistic. Again, emphasise that it is a difference not a disease or a negative thing, and does not change who they are.

Where to access support and find information online

There is lots of support and information available for autistic people and parents of autistic children. A good place to start is to find local services and groups. Your doctor’s surgery, child’s school or local authority are all good places to ask for this information. Meeting other parents of autistic children can be hugely comforting and supportive – they will all have been where you are now and understand, at least in part, how you are feeling. They are also likely to be able to point you to other resources available in your area.

There is also a very active autistic community online. Many autistic adults find face to face or telephone communication difficult so do much of their networking with one another over the internet. There are many excellent autistic blogs, and autistic people generally like being asked genuine questions about how autism affects them. Parents of autistic children seeking advice from the autistic community will almost always be very welcome!

How to start planning for the future

Firstly, you should know that the future for your child is no less bright and full of hope than before you received their diagnosis. There are a huge number of autistic people living happy, successful, and fulfilled lives. There are more resources and adjustments available for autistic people than ever before, and schools are better equipped to help autistic children perform at their best and fulfil their potential. Some employers now actively seek out autistic staff.

Your first thoughts are likely to be to around supporting your autistic child through their education, and you can read more about schooling for autistic children here.

Find out what services and support are available to meet your child’s needs and be prepared to be an advocate for them if they need it. Services are set up when people ask for them, so if what you need is not available, be prepared to ask for it and seek support from others who would use it too.

The major positives for your child’s future are that they now have a diagnosis, and they have a hugely supportive and loving parent in you.

A diagnosis of autism for your child can be a shock and it is perfectly reasonable to take time to adjust and come to terms with it. But it is not a negative thing – you now have an explanation for any difficulties they may be facing and access to a huge number of sources of support and advice. You and your autistic child are not alone, and you can and will move forward together to a rich and full life.

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