At I AM we hear frequently from parents who have fought long and hard to achieve a diagnosis of Autism Spectrum Conditions (ASC) for their child. For many, it is the culmination of a long-drawn-out and stressful process of assessment. Following the diagnosis, people react in different ways, many are left feeling isolated and alone.  

Firstly, remember, you are not isolated and alone and at I AM we are here to support both you and your child.

Secondly, the variety of emotions that you feel as a result of this diagnosis are understandable. You are not a bad person or parent for feeling them!

Getting a diagnosis of ASC is often arduous. When it finally happens, it can almost leave you feeling “so what now?”. It can sometimes feel like an anti-climax and that you are subsequently left alone to sort out the challenges that were there before the diagnosis and simply having the diagnosis doesn’t change anything on a practical level.

Everyone will be different in how they process and come to terms with this new information, feelings of relief, shock, feeling overwhelmed, anger, sadness, fear of the future and even bereavement are not unusual.

Top Tips:

Find people who have been through similar experiences to talk to. Here at I AM we can offer support and have a parent’s support network and we are also in the process of building a befriender network for parents.

1. Be kind to yourself, the feelings that you have are ok, they don’t make you a bad parent. This is a lot to take in and it will take time to fully come to terms with.
2. Think about how you are going to articulate this information to family, friends and others who come into contact with you and your family. Prepare what you are going to say but try to do it when your child is not around as it may cause them to feel anxious or even undermine their feelings of self-worth.
3. Surround yourself with positive people. For your own sanity, choose people to support you that will be sympathetic, empathetic, helpful and are good listeners, positive thinking strategies are important for you too. Look for and celebrate the positives that come with ASC, check out our blog post on positive ASC here.
4. Find out about local support organisations and get in touch to see what they can offer and what might be right for you and your child. Keep in mind that your needs and those of your child are likely to change over time so although something might not be right for you now, it may be in the future.
5. Find out about ASC, there is a wealth of information out there but try to narrow it down. For example, Googling Autism will get you over 46 million results! Think about key terms and putting these in “” will narrow the search, also don’t forget to include “UK” to avoid information from overseas that might not be relevant. Most importantly make sure any information is from a credible source. There are lots of sites that promote products or dubious “treatments”, avoid these! Here at I AM we have a small lending library of books about ASC that our members/supporters can access.
6. There are numerous groups on social media, but again be a little cautious around some of the advice that might be given. If it doesn’t feel right for you and your child or situation then it probably isn’t right. If you ask a question on some groups, you might get a very wide range of responses and some of these might be less helpful make sure you can confidently filter out information or advice that isn’t going to work for you.
7. Think about the sorts of things that your child enjoys, encourage and share these interests if possible, these interests can sometimes turn into a career and can often help with building good lines of communication.
8. Recognise that there are things your child is going to have to accomplish which may be difficult for him/her. So, empathise with him/her and recognise and praise the efforts they are making. We tend to get a bit greedy with our demands, “just do five more minutes”, etc. If your child has had enough of something that is hard for them, accept that fact or find a different way of doing it.
9. Try and find a routine that works for you and your child, it might take some time to establish what works and without a doubt, there will be times when it doesn’t work but having a solid foundation of routine adds a level of predictability to a day that can be helpful and reassuring for everyone. Using a visual timetable can be helpful to support this.
10. Pre-prepare your child for new events or changes well in advance, add these to their visual timetable talking about them regularly and counting down to when they are going to happen.
11. Try to have good lines of communication with your child’s school and build relationships with their teachers and support staff. If you are struggling with this check out our blog post here.
12. Don’t chastise the child because they cannot do something due to the way they think and processes information.
13. Don’t become pushy and over-anxious! This is easy to say, but if you are trying to help your child and that involves taking on responsibility for some things that are normally the preserve of the classroom or other services, it is easy to get over-involved. Remember your child still needs a home life and to be able to relax and feel safe and accepted for who they are.
14. Don’t try and solve everything in one go. Maybe pick one or two things to work on at a time.
15. If you have concerns about your child’s health or mental health then it goes without saying seek medical advice or advice from a suitable professional.
16. If you have concerns about your child’s health or mental health then it goes without saying seek medical advice or advice from a suitable professional.

To find out about how I AM can offer support contact us at admin@i-am autism.org.uk or give us a cAll on 0161 866 8483