Daughter refuses to go to ASD assessment

[belfastyank]

After a year's wait, I finally got an appointment for my 11 y.o. daughter's ASD assessment. When I told her, she cried and said she wouldn't go. The day she was referred by the GP, I'd had to trick her to get her to the GP appointment, knowing she'd refuse, and she was really upset with me afterwards, so I had a very long heart to heart with her. I told her I think this will be beneficial to her because it might help me to understand why she sometimes reacts a certain way to things, etc. It was hard, but I think we both came out of the chat feeling pretty good. Then I made the mistake of not discussing it with her again until yesterday. She just said she "doesn't want to know" but I'm sure she's really afraid of being labelled as "different". I also think she's afraid of me discussing her behaviour with someone, which I've done in the past with therapists. She has terrible tantrums but if I were to mention it, even just to her, she will go mad.
Anyway, I'm wondering if anyone else has had to deal with a child refusing to go. Should I resort to trickery (again), bribery or what?

I would: first contact them and make sure any conversations between you and assessor happen without her in the room.
Then I would inform her she is going, no arguments. She doesn't have to do anything, but she does have to go.
And then on the day I would allow a lot of time. Plan to set off well before you need to. And just inform her of when you are going. Remain calm. Do not get angry. But be firm and get her there.

However crazily dressed she is, however likely to have a meltdown etc. Just get her there. They should be prepared for whatever happens. And it will all demonstrate behaviour.

You can tell her that this is her opportunity to prove she is "normal" if you want.

When is the appointment OP?

The 4th of February

Do not use trickery - your child needs to trust you. Once this trust is gone it is very difficult to recover.

We have used bribery in the past but, honestly, if the fear of the meeting is so great you really have to think whether a bar of chocolate or whatever is really going to make the difference. I can't think of anything that would make me do a parachute jump out of a helicopter for instance.

When this sort of meeting started to get tough (to be fair to ds1 and ds2 they were OK in initial assessments but by the time we reached CAMHS there anxiety was too much for them to co-operate) we approached it as that dh and I needed some advice on how to help the ds's because we felt we were doing it wrong rather than we wanted to change the ds's (this was a real fear for ds2 that he felt we were trying to change him because we didn't like him rather than us wanting to support him so he found the world a less frightening place).

If you can tell you dd as much as possible as what will happen in the appointment then that should help. If you don't know ring up and ask. A lot of the reluctance will be fear of the unknown.

We went with two adults so that one could sit outside with the child if they were finding it to difficult.

We arranged an initial appointment with just me so that they fully knew the background before they met the child (no matter how much information is in the referral they will expect you to repeat it).

As Molly says allow lots of time to get there - giving mine a little bit of time to get out the car and pick up the courage to go into places works a lot better than ultimatum's under time pressure.

Take something to do in the waiting room that calms the child - be it a book or an electronic device or knitting!

With the benefit of hindsight if your child reaches the point where they are becoming aggressive to avoid the appointment ask for a home appointment rather than going into the clinic. They will not publicize the fact they can do this but did do a couple of appointments at home for ds2 when he was at his worst.

Ds was just turned 15 when he had his specialist speech and language assessment for ASD. He was not keen at all. At the time I briefly mentioned ASD but I focused more on it being just an assessment with a speech therapist. He wasn't happy but it meant time off school so that helped!

I asked the SALT at the start of the appointment if I could speak to her alone for a couple of minutes, Ds said he would consent to this. She refused so I couldn't mention a couple of things that I would have liked to as I know Ds would have got very upset.

It was a difficult appointment. She explained to Ds at the start about assessing for ASD. At times he was blunt and at one point got a little annoyed but I think that just helped build a picture of him.

This assessment formed the basis of his diagnosis. Apart from a couple of questionnaires it was all the evidence the paediatrician needed to diagnose. Ds was in denial about his diagnosis for quite a while. I'm not sure he's that accepting now and he seems to blame me for it but I don't regret the decision to get him assessed.

I think you should try and be honest with her. Those doing these assessments will be used to more unusual behaviours, so don't worry about that aspect. Good luck, I hope you get her there.

So you have some time to get her used to the idea. I would just keep telling her that on 4th February she is going to see X person at (wherever the place is). As PP said ring up and ask what exactly will happen so that you can explain this to DD. Keep explaining what will happen.

Tell her you are going because you want to help her and understand her better and it might help her to understand herself better. Tell her you are obviously doing something wrong as she has meltdowns (not tantrums) when she gets overwhelmed by whatever it is you do wrong and you want to find out what you should be doing instead.

Tell her if she feels overwhelmed in the appointment she can always ask to have a break. Could her dad or other family member go with you so that someone could sit outside with her if needs be?

And tell her that after the appointment you will be going home again.

Thank you so much, everyone, for all your advice! I'm taking all of your input on board to come up with the best "speech" for when I approach the subject with her again. I rang the assessment centre, too, and the lady there told me that I can bring DD there ahead of time to see where the assessment will take place. I may do that. I just need to first focus on talking to her about why I think it's a good idea to get assessed.

My son was 7 when he was assessed and diagnosed so I didn't have this with him at the time, but this past summer holidays (he'd just turned 10), he had a few weeks with one assessment after another - first for ADHD diagnosis, then SaLT, then OT, and another long CAMHS assessment before starting meds. he's always been pretty biddable but he got really annoyed and I sensed he might dig in and refuse after the first two. I did similar to @Ellie56 suggestions and told him the sole purpose of the assessments was for school's benefit so they can be given information about how best to teach him, because they are struggling, not getting it right, and they need help. He accepted that and there was no further resistance. Good luck :)