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Summer Holiday Strategies
  • VeganDad
    Posts: 26
    Hi all,

    We are having what feels like a truly terrible time of it. We are trying to work toward a diagnosis and come to terms that our son has this debilitating condition, and the impact it's having on our family life, and now we are at our first real summer holiday break when this condition is in full flow.

    My sons outbursts, meltdowns and general well-being have escalated slowly over the years, but last summer it really started to go up another gear. This was masked most of the summer as we were in our caravan, he was out playing all day every day with his cousins etc. he really coped well, all things considered. When we got home in September, the shit hit the fan and it has gotten progressively worse ever since.

    School finishes this week and I am absolutely dreading it. I am working away a couple of days a week (I could pull out of this if I had to), and we have an older son (he's 12) who bless him takes a lot of abuse and grief off our PDA son (8 years old) but is also struggling to cope with everything.

    Rather than get into the ins and outs of all that on this thread (bit late maybe? lol), I'm wondering:

    - What are your strategies for coping during holiday periods?
    - What hints and tips can you give, not just for the PDA child, but for the wider family unit to cope?
    - How do you achieve any respite?

    Wishing you all a wonderful day x
  • RhanHRhanH
    Posts: 497
    I'll send you a PM. Check out the messages tab at that top.
  • PDA_ASD_Parent
    Posts: 3,338
    1) I don't have any strategies per se, I just wing it and hope for the best. I am very flexible with them anyway, so where issues arise it's usually because they have triggered one another or they are refusing to do something they absolutely have to do. Their time is their own free time and I don't make any demands of them. Even so, there is a lot of controlling and harassing behaviour and meltdowns can just flare up despite your best efforts.

    2) Try using humour and finding alternative ways for asking for things that need to be done from your son, ensure he has a quiet space he can go to when overwhelmed and pick your battles. For other relatives, don't place expectations to see them if he feels unable and tell them to read up on PDA to help them understand, don't be embarrassed at what might seem like naughty behaviour in the presence of relatives.

    3) I don't. Really the only options are either relatives helping out by child-minding or requesting an assessment of needs by social services. However, without a diagnosis they are very likely to parent-blame and it might bring a whole world of problems you could have done without, even if it doesn't, without a diagnosis they will deem you below threshhold for respite, there would be a waiting list in any case (so the holidays would be gone by then) and you would be probably sent on a parenting course because they just don't understand ASD letalone PDA.

    For many reasons, you really must request a PDA assessment via your GP urgently.
  • VeganDad
    Posts: 26
    Hi PDA_ASD_Parent :)

    Thanks for writing back.

    We are already in the formal process of trying to get the PDA assessment. We have had an appointment at CAHMS recently, the Doctor seemed like he wanted to be kind although he was arrogant and rude, but he refused to believe any signs of ASD, did not really know anything about PDA. He went with a diagnosis of extreme anxiety and Emotional Dysregulation Disorder (EDD) which is part of the BPD family of conditions roughly I believe.

    So our journey continues.

    After having a minor crying meltdown on the train to my business partner on Monday, I have had to cut my week at work short to come home to put a few days into preparing our evidence properly, listing out all this traits and symptoms and also to call the Elizabeth Newson Centre again, the PDA Society, and anyone else I need to call, in order to do what needs to be done.

    I'm highly anxious myself this past week or two with everything going on, so I'm just trying to keep my head above water now and make some progress.

    Fingers crossed xx
  • PDA_ASD_Parent
    Posts: 3,338
    The irony is, that autistics have emotional dysregulation. This is a typical NHS approach, sticking plaster, by identifying some of the symptoms but not underlying cause. So many doctors in the NHS just have no clue about autistic masking. Here's a Google search on emotional dysregulation in autism:

    https://www.google.co.uk/search?q=emotional+dysregulation+autism&ie=utf-8&oe=utf-8&client=firefox-b&gfe_rd=cr&ei=jllvWcvBEtPO8gfK06gg

    The NHS seem to love breaking down conditions into separate labels to avoid giving the actual diagnosis of what's causing it. Such a crazy mentality.
  • PDA_ASD_Parent
    Posts: 3,338
    Here is a Google search on masking in autism:

    https://www.google.co.uk/search?q=emotional+dysregulation+autism&ie=utf-8&oe=utf-8&client=firefox-b&gfe_rd=cr&ei=jllvWcvBEtPO8gfK06gg#q=masking+autism

    You can also search on 'camouflaging and autism' or 'passing and autism'.

    Autistics doing this can be viewed by doctors not to have any traits of autism because they have stereotypical views and expect it to be really obvious. Girls far more often mask but boys can have that female type ASD presentation too.
  • VeganDad
    Posts: 26
    Thank you for the links, I will read into them but I was already aware from this forum of masking to some degree.
    I made a major cock-up in foolishly expecting the Doctor to understand these things and also, I did not realise the appointment was on due to the huge stress my wife and I have been under. We thought it was a routine appointment and not an assessment. We were essentially completely unprepared. I was gutted! Luckily we can hold our own.

    But back on point, the Doctor absolutely ruled out ASD/PDA because of my son's social skills and the fact he didn't display problems in school - the two top reasons always claimed, both of which are false!! It was laughable!

    After the EDD diagnosis, as he wouldn't do ASD/PDA there and then, I got home to the PDA Society webinar where, as you say, Emerging BPD conditions after the #2 mis-diagnosis after ODD.

    My son was diagnosed ODD about 18 months ago.

    The whole thing is textbook mis-diagnosis and delays.

    But we are on their case now, and we will not stop until we get the right answers! :-) :-)
  • PDA_ASD_Parent
    Posts: 3,338
    I'm guessing the school denied any socialising issues or said they hadn't noticed anything. An autistic child can be on the periphery of a group and not included in the play but to teachers not knowing any better it can look like they are playing with other children. Also, the information on this website states that social skills in PDA can be better than other ASDs. Many autistic girls are misdiagnosed due to superficially better socialising skills and mimicking others and it may be that your son has that more female presentation.
  • VeganDad
    Posts: 26
    Yes, the school denied pretty much everything for most of the time.
    They did the in-school assessment and ELSA etc. but kept coming back 'all clear' and 'must be a problem at home'.
    The head mistress, although appears super supportive, was very dismissive that it was nothing to do with or affected by school. Our point was the anxiety was picking up in school was causing outbursts at home. Since I told her of the EDD diagnosis last week she seems to have totally changed tune, which is much more helpful.

    Some of the things that have happened there have been unreal. Just two weeks ago, my son was in the carpark having one of his morning meltdowns, the head mistress came out to help cajole him in (his anxiety wasn't too high that day which is why we allowed it). Later on, one of the ditzy teachers asked him why he was playing up for Mum and wouldn't come into school!

    Can you imagine how he felt after that!
    Makes my blood boil... but anyway, I must let it go and move on...
  • PDA_ASD_Parent
    Posts: 3,338

    'must be a problem at home'.



    So how do they say conversely that the problem must be at home if the child is acting out in school, by their logic if the child is acting out at home the problem is caused by school...
  • June67
    Posts: 155
    Many of our home problems appear to have stopped now we're not at school so yes must have been a problem at school...lol
  • PDA_ASD_Parent
    Posts: 3,338
    Same here. Had some meltdowns from youngest yesterday but the behaviours are a lot less from both of them.
  • VeganDad
    Posts: 26
    Unfortunately we've had an awful start, I think mainly as it was his birthday yesterday, and the possibly perceived pressure over the day before and then yesterday sent him over the edge.
    Am going to have to post about it separately though as I need advice, or may ring the society today.
  • June67
    Posts: 155
    Yes birthdays do that to mine, we have weeks of tantrums before hand over everything to do with it, gifts, party no party too many people, not enough all that. Then a stressful day as they want everything 'perfect' trying to manage it so they are not overloaded etc.

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