ASD/PDA?

Hi. I have a 16yr old daughter. She has shown signs of ASD since very tiny. (Please bare with me for the lengthy post!). At around a year or so she would have a complete meltdown for things such as a teddy bear slipping slightly out of place or the milk in the wrong place in the fridge. She never engaged in imaginative play, but would line up toys or "sort" them into groups. Or one of her favourites was to have "teams" of toys and then throw the dice on behalf of each "team" and write down their score. She'd play this for a while until she got bored and then add up the scores to see who won.

She was always a child who needed pre warning about things. I'd have to give her a 5 min warning if we were leaving a park, or going out the door. If I didn't give this warning she would be distraught and have a complete meltdown.

You would also have to word things right so you gave her choices rather than told he she "had" to do something.

From the age of 4 she began having huge anger meltdowns after school. Always directed at her little brother, but which would go on for hours, normally until she collapsed in a heap of tears, too exhausted to carry on. Often we;d find out that there was someone at school that had done something to annoy or upset her. Most of the time it would be something that we would see as trivial (but obviously wasn't to her). At 4 she suddenly one day began crying. She couldn't tell us why she was crying, just that she felt "not right". We took her to the doctors who said it sounded like anxiety and it was normal at her age. This went on and off for a few months which resulted in her missing lots of school and then disappeared.

At 7, something similar happened. She woke up one day crying that she didn't feel right. We took her to the GP (she NEVER cried around these occasions about anything apart from at the end of an anger meltdown so she wasn't an over dramatic child about minor ailments). After numerous trips and seeing several locum doctors as well as our own (and have a school attendance of around 60% when before to this she was a 100% attendance girl), the doctor finally prescribed her lactulose as she was struggling to go to the toilet. Slowly her anxiety began to improve so we assumed it was that that was the problem.

Meanwhile, in between these occasions at 4 and 7, she was still having 3-4 anger meltdowns a week of extreme proportions. Screaming, throwing things etc for hours at a time - always on a school day.

At age 9, another anxious episode hit. This time she was adamant her belly felt funny so we took her back again to the doctors (just to clarify, she had "nerves" at other times in her life which she said this didn't feel like. It just felt like her belly was rolling around, but NOT like normal nerves). Due to her belly she was crying from 5am when she woke up until 8pm when she would collapse in her bed. She had sores under her eyes due to crying so much. She saw numerous doctors who looked at me as if I was making it all up (she would always calm herself before seeing a doctor and appear fine). Eventually, one doctor reluctantly referred her to a paediatrician. However, there was nothing physically wrong with her so after blood tests and height/weight etc she was discharged, telling me I needed to get school to refer to the school nurse and the GP to refer to CAMHS as she had severe anxiety which needed sorting before she hit teenage years. By this time again she had missed months of school.

The school WOULD NOT refer to school nurse but kept saying the GP had to do it. She finally got a referral to both but CAMHS rejected her referral and by the time we got to see the school nurse her anxiety and subsided and they decided it was best to leave her now and for me to ring if it started up again.

At 12, she was at a new school and it started again. They had a resident school nurse who said she could do nothing at all and the GP had refer her. By this time we had complete school refusal and she had been off since mid July until the October with no sign of her improving. She didn't leave the house at all. Didn't speak to friends.She completely shut down on life. Camhs rejected her again. She was referred for CBT but refused saying she was too bad for "just" counselling as she couldn't leave the house. We were referred to Early Help who was all very nice but could do nothing at all as the only two organisations had rejected her referral.

School said she couldn't see their own in-house counsellors because "they had to be saved for the children who were actually attending school". 

So we had no choice but to take her out to home educate. By this point she has been off school for six months with no inclination of that changing and school were refusing to accept their was a problem as we had no consultant letter to say so!

Once out of school her anger disappeared completely. Since the day she stopped attending school (in the July when she was still 12) to this day now she's 16, we haven't seen an ounce of anger.

She appeared to improve drastically, started volunteering with a football coaching teaching younger children football. Then she started sea cadets. All seemed to be going well, but gradually her anxiety started to creep in again. She was under no pressure to stay at cadets but she was desperate to. But within a few months she withdrew and stopped leaving the house again. She gave up coaching and has completely shut down from life like every other time.

She's 16 now and is a young woman who knows her own mind. She was meant to be sitting exams next May but I can't book them (home educated so we have to book them ourselves at a private exam centre) but I can't book any of them until I know she'll get there. The more I suggest things, the more she back away from it.

I feel she has ASD with PDA tendancies. I feel these shut downs are due to masking the rest of the time and I feel that being at cadets and having the rules and structure that that entails, however much she wanted to be there, have triggered this last shut down.

But due to her age and that she wants to control her own life (and why not!?) she is taking longer this time to come out the other side.

For instance, right now, she goes for a daily walk around our immediate streets. She attempts to go to the local shops (but ONLY if she's decided that she wants to go - there is no telling her at all what to do at any time) and she will only go if I go with her and even then she flaps, sniffs her lavender oil, scratches at her fingers and normally has to leave the shop before we get anything.

She'll occasionally agree to go a bit further afield (no further than a 20 min drive and that's only been 4-5 times in the past year) and that will be for a 20 min (maximum) walk - but this is a real rare occurrence as we don't normally even get there, never mind stay there!

She knows my thoughts on ASD but she won't even entertain the idea about going back to the doctors. Her reason is that no one has ever believed her in the past, so why will they now. I said that now she is 16, they might take her more seriously or treat her as an adult rather than through CAMHS but there's no convincing her. To be honest, I don't blame her. She spent her life being pushed from pillar to post, lots of people accusing her of behaving badly with no on actually helping in the end.

She's adamant she will "come out the other side" like she always does and get her life back again.. but its' been over a year this time. The other times it only ever lasted 4-6 months.

I'm at a loss as to how I can help her.

Sorry for the huge post - but any help and advice would be gratefully received.

  • Hi , so sorry to hear your story.  I've little help/advice to offer - sorry - but your story sounds extremely similar to mine (DD now 19 yo) and I'm also still trying to figure out the ASD with PDA tendencies.  (Or simply just PDA?)  We've been on the Adult ADHD*/ASD waiting list for 19 months, now (*I am Dx'd with Adult ADHD and dyspraxia), and I keep meaning to find out how much longer we're likely to wait, but put it off because I need to pull together all the years of evidence first, in case their response is, 'We've just had a cancellation; can you come in tomorrow?'.  Outside chance, I know - but it's what happened with my ADHD assessment - a day and a half's notice.  And my poor DD has seen so many professionals (educational, police, medical) that she has little, if any, faith in them.  She has great issues around trust, so I really need to get this right.

    As I said, not much help to you.  But your experience resonates really strongly.  My DD also refused to consider ASD/PDA etc four years ago and didn't wish me to pursue an assessment.  She finally conceded last year, and agreed she wanted me to investigate - but the waiting lists have grown so crazily that I suspect we won't get seen any time soon.  My DD has also had several honeymoon periods (a bit like yours always 'coming out the other side') - but each time her anxieties have crept back in and we've had the same old stories of non-attendance (each new school/college), threats of dismissal by school/CAMHS (non-attendance; 'failure to engage') or anxiety meltdowns preventing her continuing doing things she's finally got round to applying for and doing (eg volunteering in an arts for mental health organisation).

    We have a local Autism & Adult ADHD clinic here in Devon.  If you have something similar, I'd gather together evidence of you daughter's medical/educational history that illustrate ASD/PDA symptoms and ask your GP to refer to same.  If he/she refuses, then ask for a second opinion.  Heather (mod)'s advice below - to phone the Autism helpline team - sounds like your best option, though.

    Very best of luck.

  • Hi NAS49987,

    Welcome to the forum, I am sure you will find help and advice from the community members but in the meantime you may like to contact our Autism Helpline team who can provide you with information and advice . You can contact the team via telephone on 0808 800 4104 (Monday to Thursday 10am to 4pm, Friday 9am to 3pm). Please note that the Helpline is experiencing a high volume of calls and it may take a couple of attempts before you get through to speak to an advisor. Alternatively, should you prefer to send a message, you can do so via their webform:

    https://www.autism.org.uk/services/helplines/main/questions.aspx

    Kind regards,

    Heather - Mod