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For so many autistic people the helpline is the first contact that they have with the National Autistic Society. Last year we answered 16,337 enquiries from autistic people, their families and professionals. Our trained advisers really do some brilliant work - but don’t just take our word for it.

The following transcript is based on a real call. All enquiries to the Helpline are held in the strictest confidence, so some of the details have been changed to protect the anonymity of the enquirer.

 

Adviser: Hello, you’re through to the National Autistic Society Helpline, how may I help today?

Enquirer: I’ve not called before. My daughter is 19 and was diagnosed last Christmas. I’ve looked online and there’s a lot of information. It’s a bit complicated. A couple of things – bit of a long story. My daughter had a few issues at school. She did well but she’s now gone on to university. She’s a bit homesick... she had a crisis. She’s been to CAMHS and they’ve referred her for CBT. They said that waiting lists are 6 to 8 months. Is that normal?

Adviser: I’ll do my best to advise you. But we wouldn’t have information about waiting times. I can’t say for definite whether something is considered normal or not because we just don’t know. It can vary so much up and down the country.

Enquirer: I know the NHS is underfunded and I know times are difficult but it’s a really long time. A lot can happen in 6 to 8 months.

Adviser: I appreciate it can be very frustrating for families to be given long waiting times, but I wouldn’t be able to say for certain what is usual.

Enquirer: She was suicidal.

Adviser: I’m so sorry to hear that. I understand this must be a stressful time for your family. Unfortunately, this is not an uncommon enquiry. Is the university offering her any support in the meantime?

Enquirer: She’s feeling a lot of strain. She’s away from home. I visit as much as I can but... it’s a good university, they are doing what they can but she’s been masking her behaviour her whole life. It’s kind of eaten away at her.

Adviser: That’s not uncommon, particularly amongst girls and women. I understand that you’re worried.

Enquirer: We’ve found an alternative counsellor so we don’t have to wait. But I’m just scared -

Adviser: Do you know if they have any previous experience with autistic people? Are they tailoring their plan to her autism?

Enquirer: Oh I don’t know. Should they?

Adviser: It can be important for counsellors to have an understanding of autism as they may have a better understanding of your daughter’s needs and challenges. We have a directory of counsellors with autism experience. It’s not exhaustive but hopefully it’ll be a start. There will be a few on there that are far away but sometimes it can be worth calling them too as they may have colleagues or branches nearer to you who aren’t on our list.

Enquirer: Oh that will be great.

Adviser: It’s also worth asking the counsellor that you’ve found if they have experience too. We find previous experience or training can sometimes help.

Enquirer: I didn’t even think to ask.

Adviser: I’ll send that list over. Is email ok?

Enquirer: Yes please.

Adviser: That list will be on the PDF attached.

Enquirer: She just can’t keep up with everything. Everyone around her has these expectations and she spends so much energy just keeping up. She’s had to make new friends… at least I hope she’s making new friends. She tells me about some people but I just don’t know. She’s having the worst time. She’s always exhausted.

Adviser: Did your daughter have an education, health and care plan in place whilst at school? They might have called it an EHCP.

Enquirer: Yes. We had one in place. They’re a good university. They take wellbeing seriously. I’ve seen wellbeing sessions and advice given out. They are considerate in that way. They want students to relax. But I don’t know.

Adviser: Does the university have a specific plan in place for your daughter?

Enquirer: No. It’s all sort of happened so fast.

Adviser: I can send you some information regarding what the university could be doing to better support your daughter. The EHCP can be helpful starting point for the university to work from. It can be useful to look back on and to give the university a clearer idea on what support may be useful.

Enquirer: Right.

Adviser: It’s ok if it’s all a bit overwhelming. It’ll all be in the email I send over so you can take your time and go through it. You can decide if you want to pursue things with the university or not. I’ll also add details of our Education Rights team. They work on a call back service and they’ll probably take a couple of days to get back to you but they’re in a much better position to talk you through education enquiries than I am. I hope that it’s a useful starting point and things will get better.

Enquirer: She’s everything to me.

Adviser: Of course. Let me get everything over to you as quickly as possible. Can I please take down your details and I can get everything over to you now…

 

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