6 things Christian parents can do whilst they wait for their child’s Autism diagnosis

My son was sixteen when he was diagnosed with autism. It was just before he was due to take his GCSEs. While I felt relieved that someone had finally agreed that our son experienced the world differently to many of his peers, there was also some feelings of guilt. Why hadn’t I noticed earlier that he was autistic? Why had I missed so many signs? We had a son who was a rule keeper, had sensory difficulties particularly with noise and touch, and found changes to his routines difficult to cope with, often resulting in what we now know as a meltdown. As they say, hindsight is a wonderful thing!

Most additional needs parents I’ve met are happy to help support other people, especially those just starting out on the journey

As parents we can be very good at blaming ourselves. However, I hadn’t really been aware of autism, so I just saw him as an intelligent, but emotional and somewhat quirky young boy who loved technology. It was only when our daughter came home from college and said that her brother reminded her of a lad in her college class who was autistic that the penny finally started to drop. We approached his school about getting an assessment, which they agreed to, and four years later we got the diagnosis of autism.

So how do you manage waiting for a diagnosis, particularly if it comes later in the child’s life or even into adulthood? Here are a few ideas:

1. Find your tribe – There may be a someone you know who has a child that is already diagnosed with the same condition as the one you’re having your child assessed for. It might be someone at the gym, park run, work, church, school gate, etc. Explain to them that you’re awaiting an assessment and ask them if they’re happy to be a confidant and share advice, if you need it. Most additional needs parents I’ve met are happy to help support other people, especially those just starting out on the journey.
2. Trust the process – As in our case, the assessment period can seem like it goes on forever. However, those doing the assessment want to be 100% sure that they come to the correct diagnosis for your child or young person. If you do feel like it’s not progressing, ask questions about what’s happening, and keep pushing until you get answers. Hold on to the knowledge that you will get there eventually.

You know your child best, so trust your instinct

1. Talk to God – Tell God how you’re feeling and share any concerns and worries with Him. Ask him to give you His peace and patience while you wait. It’s not always easy to be patient, and I know sometimes my prayer has been “Lord give me patience… but hurry!” If it feels too hard to pray yourself, ask trusted friends to pray for you and your family.
2. Don’t feel guilty – If your child gets diagnosed later in their life, don’t feel guilty about it. Often, we may hear the names of different conditions, such as ADHD, dyslexia, autism, etc., but don’t know much more about them. This can result in us missing the clues that our child or young person may have a particular condition.
3. Don’t be put off by negative responses – Sometimes people react in a negative manner when you say that your child is being assessed. Don’t let these comments put you off going for assessment. You know your child best, so trust your instinct. If you believe that there is something worth investigating, there probably is.
4. Do some research – If you haven’t already, spend some time researching the condition your child or young person is being assessed for. This can be as simple as reading some books about the condition. If you can find some that are written by people who have a lived experience of it, so much the better. Knowing more about the condition can help you support your child or young person.

Read more:

Neurodiversity isn’t a problem to fix, it’s a gift to the church

Rethinking Christian hospitality for families who can’t do shared meals

Why I’m worried that SEND changes will push more children through the cracks

If you are supporting a family waiting for a diagnosis what can you do? And what should you avoid doing?

1. Believe the family – Sometimes the response that families get when they say that their child is being assessed can be “Are you sure?” or “He/she seems normal to me”. These comments can make the parents doubt what they’ve noticed about their child and can also hurt. Saying that the child seems ‘normal’ implies that children who have been diagnosed with a condition like ADHD, dyslexia, autism, etc. aren’t normal, and are seen as less. This, of course, is not true. Just like everyone, they are made in the image of God and loved by Him.
2. Listen to the family – There will be many concerns, worries and questions circulating in the family’s brains, so offer a listening ear. You don’t have to have any answers, but having someone who will listen is helpful, if not vital. It gives the family a chance to relieve some of the stress. As the saying goes: “A trouble shared is a trouble halved”. Make it a habit to check-in with the family on a regular basis, so you can pick up any new worries or concerns.

you won’t know how you can support them well if you don’t ask them. Make sure to check in regularly as support needs may change over time

1. Don’t judge – When the child or young person is doing something that may be different to what is expected, don’t judge them or their parents. A friend of mine told me recently that when her son was younger and experienced meltdowns at church, it was often met with tuts and eye rolls. While the son may not have noticed, his mum did. Tuts, eye rolls, staring, and loud comments are not helpful, welcome, or necessary. If you ever see someone reacting like this, then do call it out.
2. Ask what support is needed – Instead of judging, ask what support is needed. It might be that the parents need someone to help look after the child or young person while they go and have a coffee together and some much-needed time to chat. The family might need some help picking up some shopping or prescriptions. They may welcome some meals being made for the family (do check for any likes/dislikes/allergies). However, you won’t know how you can support them well if you don’t ask them. Make sure to check in regularly as support needs may change over time.
3. Pray – Once you’ve listened to the family and found out where support may be needed, don’t forget to pray for them. Remember to pray for all the family – the parents, the child or young person, any siblings, and the wider family. Pray for the difficulties that they may be facing but also praise God when solutions have been reached. However, remember that the family may want to keep prayer needs confidential, so don’t share them without their permission. Also, remember to pray for guidance as you seek to support them.

If you’re waiting for a diagnosis for your child or young person, may God bring His peace to you as you wait. If you’re able to support someone in this position, then please do come alongside them. You may feel like you can’t offer a lot of help, but that little bit of help may well be just what they need.