What Waiting Years For An Autism Diagnosis Could Mean

Imagine your child reaches three years old and still doesn’t say a word. They don’t point to anything, comment or smile. They sit and repeat patterns of play over and over again and get upset if they are disturbed. You have some suspicions and after chatting with a health visitor you think... may be my child is autistic?

How can you find out? How can you help them? Would you wish to wait until your child reaches seven years old before you manage to get a diagnosis? No.

Yet, in some parts of the country that’s exactly what’s happening. According to information from former health minister Norman Lamb this week, some people with suspected autism are waiting more than two years to be assessed and almost four years to receive their diagnosis.

The NHS guidelines say any child or adult in England who are thought to be autistic should be assessed within three months. However, new statistics released by NHS mental health trusts in England under freedom of information laws show this is not happening in parts of the country. Additionally, there is no recommended waiting time for people to receive a formal diagnosis after assessment so even when people are being assessed, there can be a long wait till knowing the result. Imagine what happens in your life in four years. Imagine the impact having a diagnosis could have.

Both my sons were diagnosed with ASD (Autism Spectrum Disorder) aged four years old.

Without this diagnosis I believe:

1. David would be in the wrong school (as his school requires an ASD diagnosis for admission)

2. David would not have learned sign language or PECS David may not communicate at all

3. David would not be able to play near other children

4. David would hit and hurt people

5. David would not be potty trained

6. David would not sleep unless exhausted

7. David would scream and cry a lot

8. Anthony would be struggling at school

9. Anthony would be considered naughty

10. Anthony would be frightened of himself and others

11. Anthony would not know how to swim or ride a bike

12. Anthony would be angry all the time

13. Anthony would feel like a failure

14. I would feel like a bad mother

15. I would fear my boys

16. I would feel isolated

17. We would not be able to go on family days out or holidays

18. We would not be able to leave the children with other adults

19. We may not even still be together as a family.

Incidentally 19 is the number of months I may have had to wait for their diagnosis had I still lived in Berkshire, like I did many years ago. But thankfully I did not have to wait this long. It is not the longest wait in England either. I cannot express how important it is for our lives and mental wellbeing.

However, if you are caught in this limbo with your child, here are some things I can point to. Firstly, you don’t need a diagnosis to get help for your child at school. See your school SENCO as a first point of call. You do not need a diagnosis for an Education, Health and Care Plan (EHCP) either - these are based on needs.

Secondly, there are many organisations you can talk to if you don’t have a diagnosis but have had an assessment or are suspected of being autistic.The National Autistic Society and their local branches will talk to you and support you in this. I know it an be a worrying time and smaller organisations like Me Too and Co and other parents are invaluable.

And finally, diagnosis or not, your child is still the same gorgeous child they were before assessment or suspicions. Support them in whatever way you can, don’t worry about getting things wrong (it’s going to happen) and love them as you always have.