Autism and medics

[handmademitlove]

Sat in yet another hospital reflecting on our experiences in healthcare recently. I am so frustrated that most of the staff we come across have no understanding of autism and how it can affect our children.

Ask questions they struggle to answer, asking vague questions they don't understand, getting frustrated when they are unable to answer what is deemed a straightforward question. Except it isn't.

Even in specialist children's hospitals they give questionnaires to fill in which they admit are designed for NT children and don't work with ND children. But could we just fill it in anyway....

We use the NAS hospital passport but they rarely read it. I know this because they do the exact things they are asked not to do - and it is not because there is no other way. I have asked.

Has anyone found a tried and tested way to make this easier?

This is a time when you have to be more direct.

For example, when you arrive in clinic/A&E/GP inform the staff DC has ASD and requires somewhere quiet to wait (or for the GP tell them you need to wait outside and ask if they can call you/come and get you when it is your turn or when you are next). Some hospitals even have a quiet sensory room that can be booked in advance. When you see the HCP, hand them the hospital passport (you may want to see if the hospital has their own version of the hospital passport which may be more widely recognised within the hospital) whilst saying “X has a diagnosis of autism. Please read his/her hospital passport to ensure the appointment/interaction goes as smoothly as possible.” If there is anything absolutely 100% guaranteed to trigger a meltdown, verbally mention it too. Then, if the HCP does something contrary to the information in the passport, point it out and explain why it is necessary for them to make adjustments. If the appointments are running late, explain DC can’t wait - we find the staff are willing to see DC out of order because it benefits everyone not to have them waiting around.

If DC has a complex history, a summary document may help. We find handing this to new professionals cuts out the need for so many questions about DC's history. It can also help in an emergency, too.

Check if the hospital has a learning disability liaison nurse. If they do, they will often also support patients with ASD without a co-morbid LD. Some hospitals can put a flag on DC’s notes. Worth asking about that, too. Also request the involvement from the play team if you think that would be helpful.

Do you know of questionnaires that are more suitable? If so, request these are used instead. For example, with DS1, we use the Paediatric Pain Profile rather than a normal pain rating scale. The PPP is targeted at those with more complex additional needs.