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Too complex for diagnosis - what now?

(22 Posts)

DD is 3.5. Fits all PDA criteria. We haven't accessed any support or asked for interventions because she masks very well and we've already been down the route of asking for help (SALT, portage, HV, multidisciplinary etc) with DS and being told at every point he's fine, it's our parenting/he's just sensitive etc. He has private diagnosis of ASD.

We saw a well known pediatrician just recently and were told that whilst DD is on the autistic spectrum she is a complex case and an accurate diagnosis cannot be given at this stage

She appears 'fine' at nursery - in fact is described as 'an angel' articulate, intelligent and way ahead of her peers in many ways (the only surprise to me is that this is considered in contrast with being autistic) but to the trained eye (I consider myself fairly well versed in my child) this is 'surface socialbility' and comes at a high price...namely refusal episodes, violence and meltdowns after nursery each day. Im assuming there is a build up of anxiety and stressors throughout the morning and at some point it needs releasing

We were advised to get someone to observe her at nursery to see how she gets on from a social stance. She often goes mute and was completely unable to interact with anyone but me during her assessment. I've looked into our local social communication team and they need a referral and only see children from age 4 so I'm unsure who to turn to

Really I feel she needs observing in different situations because she is so able to hold it all together when she needs to but it is clearly causing stress for her.

After nursery today she was desperate for the toilet but completely unable to move from the spot. I had to carry her there and hold her gently whilst she went. I know from experience this is because her body is demanding she go and the expectation is that she go so she cannot. If I didn't take her she would have had an accident and eventually a meltdown. They've been known to last hours.

I really don't know which services to ask for help. Should I try the speech and language drop in? Any other ideas?

zzzzz Tue 07-Jun-16 14:55:11

brew. My advice would be to craft your own plan and leave it till she's older. I totally recognise the child you describe. Better put your energy into her than chasing a mirage.

Ineedmorepatience Tue 07-Jun-16 16:49:04

I think it would be difficult for a SALT to pick up social communication difficulties in such a young child! At 3.5 most children are ego centric they talk at people and only about what they are interested in!

We requested assessments for Dd3 at 5.5 but as she was already an expert masker it took until she was 9 to get a dx!

When children have Asd with a significant delay in one ir more areas they are likely to be picked up earlier but in my experience when communication is impaired but not language it is going to take a while!

Nothing stopping you using strategies that work for her though and no reason that nursery cant support with that!

If you have the paediatricians findings in writing then the nursery should be fully on board.

Good luck flowers

Thank you both for your thoughts. What happens though if I have no plan? Or if nothing 'works' with her?

Currently we are having refusal episodes every day after nursery. I have to keep carrying her home (on my front with an 18 month old on my back) or literally wrestling her into a pushchair with her scratching, pinching and kicking me at the same time as arching her back and going stiff. She wants to walk but cannot go more than a few hundred yards without something setting her off.

Today DH picked her up with her bike. Her brain told her after crossing 2 roads that she could not cross any more. She just sat down on the pavement and refused to move. I feel like we need help but 1) nobody sees what we are dealing with and 2) who do we ask?

I understand that on difficult days she needs as few demands as possible but sometimes I feel like we are up shit creek without a paddle. It's a total conundrum trying to understand what she needs. It's not possible to let a 3 year old have complete control of a household of people. I feel completely at a loss sad

zzzzz Wed 08-Jun-16 14:53:22

What happens on your best days?

Are they week days or weekends?

What makes her happy and what makes you happy?

Which bits of her development impact her opportunities most?

Who can or does help?

What might be fun?

Gosh you've got me thinking now zzzzz

On the best days (which feel pretty rare right now) she is playful, carefree and lots of fun. She floats about like a princess, dresses up, makes up wonderful stories, laughs, sings, is polite and helpful and caring and she is a cheeky little charmer

I've never really given it much thought because weekends are such a nightmare (DS really struggles with the change of routine and unstructured time and they fight a lot) She says she misses her friends and nursery when she's not there but I suppose weekends and holidays are easier with her

It makes her happy to be/feel in control, she seems to get a buzz out of new things (clothes, toys etc) which I am trying to make light of because I want her to learn the value of spending time with loved ones and doing fun things. She is happiest left to her own devices really (no demands) or when in charge. I know it's a cliqué but mostly it's seeing my children happy and content that makes me happy, and a bit of peace and quiet and everything organised.

Oh gosh the question about her development is the hardest. The social stuff makes me worry about her long term because I feel over time it will become more noticeable that she is different. I suppose the worst thing is how severely she is affected anxiety wise when a demand or expectation is placed on her. Sometimes she is unable to do things she really wants to do because her anxiety is too great and will not let her, particularly when there are lots of other people present. That really holds her back. She worries a lot particularly that we will die or leave her and her confidence and self belief is severely affected so she won't try things sometimes for fear of failure. That's hard to see. I suppose the hardest thing for me is seeing how badly she suffers at such a young age whilst her peers appear happy and carefree

I don't know who can help. That's the problem. At present DH and I are the only people who even vaguely understand her. Our family either downplay our difficulties or think she's just badly behaved, wilful or manipulative. I'm probably the only person who really gets the extent of her anxiety because I suffer with it too

What might be fun? Not having any deadlines, pressures or other people's expectations??? The real a see to this right now is I don't know. I'm too exhausted to think. I'm sure going back to the school routine isn't helping, DS is all over the place too. It's meltdown city in my house right now confused

PolterGoose Wed 08-Jun-16 15:58:59

Message withdrawn at poster's request.

zzzzz Wed 08-Jun-16 16:32:33

You DO know her smile. I love hearing Mums (and Dads) talk about their children with insight and compassion. You know I think you are more than equipped to craft a wonderful happy fulfilling nurturing childhood for her. Trust yourself and start planning. Try describing her dream day (write it down with times and activities). Then write the worst day.

I find it very helpful.

It took me far too long to realise that this is their childhood (and my turn at motherhood), it's one go and wasting it is far more of a tragedy than any disability.

Polter I know she's young and the ASD may be a factor but I feel at present she is more motivated and cheered up with material things. When she is upset or anxious or miserable I cannot reach her. She won't let me near her. I feel like my words and actions are never enough. Yet I know if I was to stick on the TV, give her an ice cream and buy her something new (these are things that we do but not on a daily basis) then she would probably be far more happy than if I were to cuddle her. I don't know if that makes any sense. She loves when I tell her about the night she was born or about the special place I have in my heart just for her but at times I feel like no matter how much attention we give her or time we spend together she just wants more 'stuff' - I guess there are many factors and age is a big one. I just don't want her to feel like the only way to cheer yourself up is to buy something new. (Starting to look at myself now and wonder if it's a learnt behaviour blush)

In terms of why she can't be given a diagnosis right now I really don't know. She said DS was a much more obvious case (nobody else thought so) and she can't get a full picture of DD yet. I suspect because there is so much controversy over PDA and I'm fairly certain that's what she has. Also she masks at nursery (so did DS and still does at school as you know). I feel it would have been beneficial to have an ASD diagnosis even if it was added to/altered at a later date.

zzzzz you've really made me smile thank you. flowers deep down I know that I know her and what's best for her and I know that I have the power not only to make her childhood enjoyable but to equip her for a world that's built for neurotypical people and help her grow into a strong, level headed, compassionate woman. But it's hard not to worry about her future when she's struggling and in such a state of panic and I have no idea what's caused it (because the trigger is rarely the cause as I'm sure many know) or what to do to help her especially because there are so many extra factors than with your typical child

knittingwithnettles Wed 08-Jun-16 18:27:22

I have a child with ASD. I have a child with dyspraxia. I have an NT dd. She used to behave appallingly after nursery until she got home safe and sound. She possibly has a bit of Sensory processing disorder (although I didn't know that at the time)
Children are tired after nursery. She may be potty trained but that can mean hanging on for a long time because you forget to go, and are trained to hang on. Children of 3.5 can get incredibly stressed by toileting issues, whether they have autism or not. I don't think it is unusual to have tantrums after nursery, or to refuse to bicycle home, or want nice new things all the time and mummy's attention. Yes it is tiring and exhausting and draining for you, but I think you are overthinking this.

Perhaps nursery is too long for her, maybe she needs to spend more time with you, if that is possible? If my child were getting noticeably stressed after nursery (however she behaved when she was there) I might think it was a message that she should go for fewer sessions; perhaps wait until she is a bit older?

By all means reduce demands; but that might mean scaling back expectations of her, rather than just giving her lots of fun activities or new things. I know that when you have one autistic child it can colour your view of your other children and you can see "traits" (just as I see dd's SPD, real or imagined) but she may just need a bit more time before you decide she is PDA. I keep saying this on every thread but have you thought of doing some fun things which are "sensory diet" orientated so that she can relax a bit and drop her mask [OT diet rather than "food"] Activities to calm and relax, to replace demands.

knittingwithnettles Wed 08-Jun-16 18:36:02

Dd also always wanted new things, obsessed by shopping etc, gifts, things that belonged to "her", territory. Looking back it was about carving out personal space and having special time with me, rather than the things themselves. She needed to learn to play with me and hated the things I did with the others (which they loved) running around outside, long walks; I wonder whether you could try playing special games with her - imaginary scenarios with toys, jigsaws, craft...dd really found it difficult to engage with me over these things (although fine doing them at nursery) - I suspect I was quite impatient and hadn't much time to play (with three children under 2) and preferred going to the park, and she picked up on that. It takes time to learn to play, often one is so busy it seems very pointless to get down on the floor and enter into conversations about toy animals etc. But I suspect if I had spent more time doing that, dd would have been able to communicate with me better about her emotions. People always used to tell me how lovely dd was, and I always thought she was v v difficult at 3.5. I feel guilty now.

knittingwithnettles Wed 08-Jun-16 18:42:23

Dd used to refuse after nursery (she would continue playing and refuse to talk to me, (whereas Ds2 would smile and hug me)and refuse to go to the toilet when obviously bursting) Sit down in the road. Hit people in her carseat. She also had violent meltdowns at home at that age. She is NT at 14. She really is. Manages secondary fine, doing well academically, lots of friends, independent, travels by herself on bus, funny friendly, opinionated. I think I should have used PDA strategies though. We would have been all much happier.

knitting I appreciate all that you're saying, especially about the nursery sessions. I suspect it is too much for her and I will think about cutting them down, although I'm pretty sure the nursery has the rule that if you claim your free sessions it must be for the full 15 hours, for their benefit and also so as not to be inconsistent for the child (or something, I will check)...however telling me I am 'overthinking' things is really not helpful or accurate. This is probably a sore point for me because I am analytical and always have been and have often been told I 'think too much' which is nonsense. I think a usual amount for my (probably autistic) brain even if it is more than some others. And when it comes to my children I think about how they act as much as I need to. If their behaviour is cause for concern then I think about it a lot more because I want to be sure I'm understanding exactly where the problems are that are causing them to act that way. I don't spend a huge amount of time thinking about DD2's behaviour because as far as I can tell it is all typical for her age.

I should point out that the issues I have discussed here are just a snapshot of what problems we are experiencing at this current moment in time. They are the tip of the iceberg in terms of the things she struggles with and unfortunately are far more than autistic traits. They are just doesn't have an official label just now.

I did actually ask the paediatrician if her behaviours were likely to be copied from her older brother..she told me that in her experience any copied behaviour would be useful to the sibling of the ND child. The problems DD has are not helpful or useful to her in any way. They don't serve to get her any more attention nor do they do anything but hinder her ability to 'get on' in life right now. They are also completely out of her control.

I totally get what you're saying about getting down on the floor and having special games together. She often wants to play alone but loves when we dance together or wrestle and loves to wrap toys up for me in blankets as presents so I could follow that lead. I will make the effort to play more with her and see if it helps her trust me a little more when she is very upset.

I'm sure it must look to some that all I have is a list of symptoms and difficulties about DD. But really I'm just struggling to know how to help her with these things, she really is a funny, unique and wonderful child but spends a lot of her time in a high emotional state and can get truly miserable. I just want to help her work through it and find happiness. I take on board all you have said and will aim to give her more of my time and expect even less of her than I've been trying to when she's especially anxious. I'm so glad to hear your daughter is doing so well and I really appreciate your thoughts and perspective

PolterGoose Wed 08-Jun-16 20:24:10

Message withdrawn at poster's request.

knittingwithnettles Wed 08-Jun-16 20:33:51

Cupoftea I apologise for sounding patronising, I too am also accused of "overthinking" so I know how it feels to be put down on that score thanks I think it is brilliant that you are responding (rather than just reacting) to dd's anxieties and doing your best to make things easier for her and explore the reasons/seek help; I suppose I just wanted to share that children do sometimes tantrum in a very extreme way at 3.5 years, and "hanging on" when you really need to pee, whilst getting angrier and angrier, is quite common isn't it?

zzzzz Wed 08-Jun-16 20:40:08

I'm sorry I haven't read all of the responses. I too am extremely analytical about my children and for me that is a real positive.

I found reading about Montessori education and the ideas she had about praise and punishment and learning and environment fascinating and much of what I think has its roots there. Reggio Emelia is also interesting as were the chapters on Asperger in that fantastic read "Neurotribes".

Honestly when you stop fighting it and set your mind to it, raising a Nd child is extraordinarily challenging (in a GOOD way). I truly believe we are the pioneers, and so very lucky.

knittingwithnettles Wed 08-Jun-16 21:35:52

One of the things that helped ds2 was "patterns" and rituals. Do you think that in some way dd's "pattern" and ritual for calming down is sitting on sofa next to tv, something sweet to suck (icecream) slowly, and then the concentration on finding out about something new (the new toy); I suppose it is like us finding it calming to have a cup of tea, and read a newspaper or mumsnet. It's a habit, there's no overload, no-one to please or relate to, just relaxation combined with stimulation of a particular kind (tv, and toy/new possession)

If you think of it that way, you can replace one sort of ritual with another. Could be a frozen chopped banana, or an icelolly made with fruitjuice, a treasure box full of items/special toys which only come out on special occasions (like weekend or stressful times) I found what got in the way of me "dealing" with dd was worries that she was spoilt or manipulative or materialistic, there didn;t seem to be any boundaries to her demands for attention. I wonder if it would have been less "morally" wrong to me to give her what she wanted if I had reframed the demands into a more acceptable "Free"/healthy form.

Sorry, more pyschobabble, you have really made me think about the past, and how I could possibly have changed the dynamic; it was so difficult dealing with her when she was in a state/screaming.

zzzzz I totally agree about the challenge being a good thing. I feel my outlook on life as well as my parenting has changed in a positive way raising these gorgeous little monkies. I shall look into the reading you suggest. I've glossed over Montessori from a play perspective and it seems to fit my aim. I'm trying to be respectful (think Janet Lansbury) but also respond to lagging skills (Ross Greene) there are definitely gaps though

Thank you knitting yes you're right I should think outside the box. It's a possibility that these things help her unwind but I also feel it's the novelty/forbidden/treat element that she thrives on and being in control of her environment. I totally get where you're coming from on not knowing what to do when they're screaming their heads brain shuts down and I feel completely unable to think during the DC's meltdowns so sometimes Polter that's where the offering cuddles comes in. Actually DD is into cuddles in a big way, far more than me (I'm sensory defensive in that area especially when my other senses are overloaded and frequently feel 'touched out' as I'm sure lots of parents do at times) I'm starting now just to give her a few calming 'tools' and tell her where I am if she wants a cuddle. It's gauging her needs when she loses her words that is tough especially when the other DC have their own (noisy) needs and often the situation is made more desperate by food needing to be prepared etc. Sometimes she will just cling to my leg or throw herself around in a manic state. I offer cuddles because I feel she is in need of them but perhaps there are sensory needs at play

*other sensory needs

knittingwithnettles Wed 08-Jun-16 22:00:52

It's taken me 15 years to realise what a difference it makes if meals are pre-prepared (think food cooked in advance and reheated). I'm not a good housewife. I didn't believe these things mattered. I couldn't understand how people could meal plan or cook supper in the morning for the evening. Or use ready prepared sauces or convenience foods.

The result was that: Even pasta freshly cooked in our house was a form of Armageddon to dish up, whereas pasta bake...or reheated pasta with pre-grated cheese and prechopped ham and precooked peas, a different story.

And then they would sit down, and they would all fight over whose turn it was to use the "golden" spoon (a place setting of golden cutlery I had bought from Zara, which caused untold mayhem, why I didn;t just buy 3 sets of golden cutlery I do not know....blush)

zzzzz Wed 08-Jun-16 23:29:34

Something that worked amazingly well for us was what I imagine is "sensory play" but was much more basic for me. I collected activities and stuff to distress him. Things that worked where SAND(I use one of those under bed plastic tubs and added different "things of interest" to be discovered, mini houses to make vilages, cars, moulds, colours), WATER(in a bucket outside, in the kitchen sink, in the bath and laundry or washing up or paintbrushes and paving stones), SMELLS, TASTES, etc etc

What worked best were things to push hands or feet in. He gets so tired and stressed.

I had for a long time, ikea expidite shelves with a tray on each shelf with activities on.

I will definitely try the meal prep thing although it's having the time to prep it as well. Plus there are so many sensory issues and aversions in our family it's often like a short order cafe come dinner time sad

The sensory play thing is fab. DD loves play sand and playdough and can happily while away hours with a tray of either. Might be a nice chance for a chat too smile

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