Is there hope?

[sugarplumfairy28]

Our daughter is 8, and is going through the diagnostic process, we are in Germany so I appreciate it may be different. We do not have a formal diagnosis, and it was only this week we got some paperwork outlining the current 'working diagnosis' with is ODD and Emotional Behavioural Disorder.

I feel like I have nothing left to give. She has not been to school this term at all, and has been formally signed off as it is causing her suffering and traumatising her. Her school is of the position no diagnosis = no help.

The very core problem is, if she doesn't want to do something, she is not going to do it, not with logical reasoning, not with bribes/rewards, and not with punishments for not doing it. She will do everything in her power to stop something from happening she does not want. That includes running away from school, screaming over someone talking and the most common one, being incredibly violent, usually its me who bares the brunt of that, she will direct it at our son sometimes and I will have to act as a human shield for him.

She objects to pretty much anything that isn't her playing within her own rules. I can't go on errands during the week, and she is constantly finding things that bother her and then takes it out on me. The clinic she is under, everything seems to be based on the concept that she is willing to do the things they ask of her, but she isn't and we're getting nowhere.

Please can someone tell me there is a light at the end of the tunnel?

Could she have autism/HFA (previously diagnosed as Aspgerger's) ? Girls do present differently, so what you may be seeing is anxiety around school and tasks that are beyond her. Also sensory overload. "logical reasoning" "bribes" and "punishments" will make no difference to her behaviour. What might is to treat her as if she has autism (there are many books out there with suggestions for the best strategies) There is a moving blog called Grace Under Pressure by a mother whose daughter was diagnosed at about your daughter's age I think - perhaps now in the form of a book.
Is there the possibility of coming to the UK to get a private diagnosis/ assessment from the Lorna Wing centre?

My son was diagnosed at 8, and we soon learned that children will often do the "right thing" (go to school, make friends, behave calmly, follow instructions, be happy in themselves) if given the right environment and approach. Also read Neurotribes.

There is definitely light at the end of the tunnel. 8 and [adolescence] are such challenging ages but with the right support and help for you as parents things will improve. I promise.

Someone else will come along on this board who knows a bit more about HFA in girls - I'm afraid I am more conversant with the ds presentation!

The Explosive Child is another good book. But my favourite is How to Talk so Kids will LIsten and Listen so Kids will Talk by Faber and Mazlish, which although not specifically for children with SNs, is so helpful at looking at things from child's POV

Needing control is a sign of anxiety and overload, a panic attack if you will. Social Stories, reducing demands, routines of a simple kind, talking in the right way (not ordering around or telling off boundary setting which used to trigger my son considerably) all reduce the anxiety and overload

Emotional Behaviour Disorder sounds unlikely but of course I don't know the background to your child's life. I am not a clinician but there have been children/teens misdiagnosed with attachment disorder, bi polar, conduct disorder, schizophrenia when a diagnosis of autism or ADHD might have been more appropriate. But as I say I'm not a clinician.

But I have a friend whose child was v difficult, who was given entirely the wrong diagnosis by the Tavistock Clinic. 2 friends whose daughters have suffered anorexia, severe anxiety and only been diagnosed very late as having autism (late teens) (nothing to do with the Tavistock btw)

Like Nettleskeins PDA/autism jumped out of your message at me. Lorna Wing is the place to get Dx for girls in the UK but not the only one (our DD who had no obvious "problems" was Dx'd just before 4 by our LA, so it can be done but my perception is it is very much a postcode lottery). She also gets very anxious, gets very very upset if she is told off even gently (we've done a lot on identifying emotions, so at least now she can tell us "I'm feeling really embarrassed" or whatever and we can talk about it and the fact everybody makes mistakes sometimes). I can see she is quite likely to have problems with perfectionism and need for control and to set her own agenda (wonder where she could have got that from? gives self hard stare).

In terms of general parenting books How to Talk so Kids will Listen that Nettleskeins recommended is great. The Book You Wish Your Parents Had Read by Philippa Perry is similar in tone/worldview and also very good (also not for neurodiverse kids specifically but I think works well for all kids). I think you can get both as audiobooks (massively increases the chances of me reading anything!!)

If you look up the PDA society website they have parenting tips too (basically: give choices, low demand, lots of downtime, whatever she may need from a sensory perspective). www.pdasociety.org.uk/families/strategies

There are also lots of wonderful books about girls on the spectrum.
This one has perspectives from academics, teachers and autistic girls and women: www.amazon.co.uk/Girls-Autism-Educational-Personal-Perspectives/dp/0815377266/ref=asc_df_0815377266/?tag=mumsnetforu03-21
This one is entirely by Autistic Women I think:
www.amazon.co.uk/Spectrum-Women-Walking-Beat-Autism/dp/1785924346/ref=asc_df_1785924346/?tag=mumsnetforu03-21

Both have different chapters by different people so you get a wide range of perspectives - I found both very eye opening and useful.

Also look up Purple Ella on YouTube - particularly her "Autism in Company" videos where she discusses experiences with an autistic friend. This is the first one I think: www.purpleella.com/2018/06/21/autism-in-company-q-a/

8 is hard for girls as all their old friends are getting more cliquey and being "in" gets more important, but our girls aren't so interested in that and find it confusing. I remember spending a lot of lunchtimes alone with a notebook recording the weather or movements of my favourite ants nest at that age, which was my way of coping (basically ignoring it all!) From what I've read and experienced (take with a pinch of salt, as I don't know for sure I'm autistic, and DD is still only 5) the key thing is to try to maintain her confidence and sense of self. Some phases will be hard but other things she will find easy if she has the confidence to be herself and play to her strengths. I find the "Autistic Not Weird" website also really good on these kinds of topics.

one of ds's trigger phrases would be if I said "that is not appropriate" he simply went berserk if I said it. I remember myself being very very sensitive to criticism and hating adults shouting or using stern even if quiet voices. The way you say things means so much to children with autism, I used to be in a complete panic lest the teacher tell me off even when I had done nothing wrong, and terrified when she told other people off for fear I would be next.

So sometimes, what seems like normal firm boundaries in family life can completely phase children on the spectrum. Even put your shoes on can feel like an accusation or a threat. whereas would you rather wear boots or gym shoes might be a better way to get something done.

The thing is, I look back and to all accounts and purposes, ds2 was being an utter brat and tyrant, making us all dance to his tune and not surprisingly this made us very upset and strung out and resentful of his controlling tactics.

It was only when we were able to take a step back, and look at why he behaved the way he did that we were able to break down some fo the behaviours (why was he screaming blue murder when we asked him very reasonably to sit down at the table although Formula I was on and he had already watched it for 2 hours... Why was he insisting that he sleep in his cousin's sleeping bag, and they were having such a lovely time camping on the lawn, and he was spoiling it)

Experience teaches you to handle these situations better.

The answer being we should have talked through the Formula I situation long before it blew up, and possibly rescheduled his lunch, or let him have it on the sofa. And the camping, well he didn't really like camping, and was deeply relieved to be put to bed and get out of that tent!!

Her psychiatrist is lovely, and our DD likes her. She has done the Autism test with her and 2 intelligence tests, plus many appointments. Her psychiatrist said she feels positive its not Autism, and her intelligence tests have come back as 'superior'. But because she likes her psychiatrist and feels at ease with her, she doesn't display many of her quirks and behaviours, and this has led to trying other departments to get a better overview and where we've hit a wall.

She has also had separate tests for sensory processing, and that has come back as sensory processing disorder indicated. She absolutely hates writing at school, and this ends up ruling out her doing most work. Despite being very good at Maths, she has had a very unyielding and unhelpful teacher and now will growl, hiss, spit just at the mention of Maths, and this will worsen to hitting and physically lashing out if you don't stop. School has gotten progressively worse as the workload, and expectations have increased with each new year, and now she is at the point where she absolutely refuses to go, or even talk about school. The school have asked us to bring in the education psychologist several times, and honestly they have been given SO many things to try with expert explanations as to why, but won't do anything without a diagnosis.

Some suggestions that have been, giving her a variety in types of work, and stop repeating the same thing over and over. Not to give her long pages of endless sums, allow her to use other media for work that needs answers writing, stamps, stickers, or a laptop. Allow her additional breaks. She gets none of these, her exceptions are, she is allowed to have a teddy, she is allowed into the classroom 5-10 minutes before class (if the teacher is there, which she isn't always), that's it.

I am willing to try anything, Thank you for all the book suggestions! But I feel like I'm swimming against the tide because no matter how much I do, the minute she goes to school, she is back to nothing and everything I've tried to do gets undone.

Am i right in thinking you cant home school in germany?
I agree with what others have said about PDA or autism with high anxiety.

That is right, homeschooling is illegal here. Initially we were thinking Autism and PDA, but they seem to have ruled that out.

Is there another school? If she cannot write, and is possibly dyslexic or dyspraxic, what provision do schools make for this? Presumably to have a diagnosis of sensory processing disorder she has been assessed by an Occupational Therapist?

Ds got on well with the team member who first assessed him when he was seven and we were told that because he had one friend and made eye contact with the professional and "imaginative" "reciprocal" language skills he did not meet the diagnostic criteria for autism. A year later, he met it (by this time he was violent in the playground when stressed) and they diagnosed him. Maybe pysch is right, but superior intelligence isn't a reason to discount autism.

If her needs in school aren't being met, if she has dyspraxia or dyslexia and spd, and not autism I can see why she might have emotional problems with this particular school. Surely you are allowed to send your child to a different school in that case???

I think if school won't make reasonable accommodations for her sensory needs and writing struggles (e.g. laptop) then it does seem you may need to look at a different school.

I would try the books etc anyway. You may find things that resonate, even if it isn't autism. But I also know girls still find it very hard to get a Dx in many countries (even in different parts of the UK). So I wouldn't necessarily rule it out...

We think the problem lies with a fundamental shortage of teachers, the EU law that states all schools must be inclusive only came in here in 2009 and they are still struggling to catch up and don't have the staff to meet this.

From what we have found out, there must be at least one school within a certain area that IS inclusive. Also that changes between schools have to be agreed by both the school you are leaving and the one you want to attend, and there has to be a justified reason for this, ie a house move to be granted admittance to the new school. In our case the reason would come down to her current school cannot support her, and they would need to outline what they have tried, and to date that is basically nothing, and any new school would reject it until the current school have actually tried... Not to mention the next school is not close by, no school buses run to it, so might even be rejected on that basis. Also our DD does not want to change school, so it could well result in the same outright refusal all over again.

She can technically write, actually her handwriting is better than our 10 year old DS but it takes her forever, she complains it hurts, she frequently stops and loses her place, and gets very upset and angry about it. Last week she stamped out a birthday card to my Dad (who she loves) with a reasonably long message and decided to hand write the envelope, which said To Grumps, Love her 7 letter name, took her more than half hour and I think 4 breaks. The school does not care, in a pinch at the end of the year her teacher (for the end of year test) asked her the questions and wrote the answers for her, but will not allow this for any other purpose.

The sensory tests, were at a clinic, with a variety of tests which took several hours, but the paperwork and final person we saw was a doctor. She can make eye contact, she is bilingual and can hold a decent conversation in both languages, especially when its something she wants to talk about, although sometimes her language is a little immature . She has maybe 1 actual friend, she thinks anyone she meets that talks to her for more than 2 minutes is her friend, yesterday she was playing in a food court with a girl and proclaimed her her friend and wanted to have a play date. Our neighbour has a 3 year old granddaughter and she plays next door regularly but its very much a 'friendship' she can control.

She is incredibly strong, she has smashed a glass window on our living room door, she has wrenched her bedroom door off the hinges (German hinges are bedded deeply into the actual door) she can lift a door clear off the hinges. I can no longer bear hug her to calm her down, she bruised my kidney with a punch. She will use violence as a very effective way to stop whatever is happening around her. On our way back from the UK at Easter she had a meltdown every 2 hours, going along a motorway in Belgium she was trying to kick my husband in the head while driving, she has no concept of how dangerous she is being.

Everything you have said about conversational ability etc is quite consistent with autism (my daughter's vocabulary has always been advanced and she is ahead of most of her class in Reading.... But she has always communicated in a different way and still does). I'm not saying she is, but it may be worth reading up and seeing what you think. Eye contact is a bit of a red herring. Most autistic people can do eye contact, and some have no problem with it (though we were told my DD's eye contact with her assessor was "unusual" which I think meant less than average at her assessment).

Re: the handwriting, could she be hypermobile? That could make writing more tiring.

There is also a book called the Highly Sensitive Child that may be worth a go. It does sound a tricky situation with schools.

From my admittedly non expert research I have come up with Dsypraxia or Dsygraphia to explain the handwriting. ODD or PDA to explain this constant refusal to do even the most simple of tasks, or even things she has said she wants to do, but also ODD as to why she seems to intentionally annoy people and be spiteful to them.

She has extreme anxiety. She shows every symptom for a 20 point list for ADHD for girls, but also this short list for HFA in girls, is also her:
A special interest in animals, music, art, and literature
A strong imagination (might escape into the worlds of nature or fiction)
A desire to arrange and organise objects
Not wanting to play cooperatively with female peers (for example, wanting to dictate the rules of play or preferring to play alone to maintain control)
A tendency to ‘mimic’ others in social situations in order to blend in
An ability to hold their emotions in check at school, but be prone to meltdowns or explosive behaviour at home
Strong sensory sensitivities, especially to sounds and touch (for example; clothing tags, socks or even deodorant).

I appreciate it is a complicated process, but it worries me how many disorders she seems to fit the profile for

There is a lot of overlap. Lots of kids have autism and ADHD. I think (but not an expert!) that PDA is really a "type" of response to autism, and ODD is really a more old fashioned term for the same thing. It may be easier to think of her as neurodiverse and identify the traits that you think cause her difficulty and try to accommodate those, rather than try to work out exactly which "bucket" she fits in.

An occupational therapist would identify hypermobility, poor motor skills, balance (giving a percentile) handwriting difficulties (dysgraphia and dyspraxia) although usually a paediatrician has to diagnose dyspraxia or dcd to rule out any medical reasons for motor problems (ie brain injury)

Has she actually seen one? An OT is different from a pyschiatrist or an educational pyschologist or a clinical pyschologist,

intentionally annoy people and be spiteful. this is often due to lack of social imagination. she knows that she will get control and attention when she behaves in this way, even if it is negative attention (ie being told off) it is also like the violence a way of releasing tension or pent up anger/frustration/sadness. I really don't think it is spite in the sense that you mean it.

Sometimes you have to talk through how to make friends, and how to behave in social situations, be kind to others, consider the feelings of others. The child may be mimicking stock friendship behaviours, but not really getting the minutae of the social interactions that is part of being a friend (turn taking, listening to another point of view)
So you have to break it down for them, or limit the number of frustrating "fail" situations. Reading fictional books about children and friendships often helps amazingly - i remember lapping up Enid Blyton, school stories, Little House on the Prairie because so many of those stories were about empathetic understanding of others. I didn't get it, I had to be taught it through reading about others.

It is not a question of spite.

Light To be honest I'm not a fan of the labels, she is who she is, but it would seem here the exact label is very important. I've shown the school all the information, the reports that say there is clinical evidence of a neurological disorder, we have been so open with the school about every meeting, every appointment, every conversation, and it always come back to give us the name, give us the piece of paper with the diagnosis code, it is so frustrating.

We have seen a group of therapists, this was during the sensory tests and concluded with an overview with a doctor. She has seen a psychologist through school, a different psychiatrist, and then her current psychiatrist which is all through a specialist paediatric clinic. She has done all the tests via her psychiatrist. Due to the severity of her behaviour in every other situation other than with her psychiatrist she was admitted as a diagnostic inpatient to try and get a better over view more quickly. She was there for a week, surrounded by therapists, but apparently no-one was really paying attention because the first week is considered a settling in period (this inpatient stay lasts between 3-6 weeks) and we had to pull her out due to a fundamental issue with food (she didn't eat for a week) her psychiatrist supported this. We then moved to a day clinic approach, where there are daily therapies and school but she comes home every day. The inpatient stay means she does not want to return to the site and has a huge amount of anxiety about it, so we were offered a parent and child place at the day clinic, but it all hangs on her willingly attending, which she did not. We spent a day there, but it resulted in her grabbing my bag, which ended up around my neck, and pulling me backwards onto the floor.

Unfortunately the process here is very different, I haven't spoken to anyone who has had the same inpatient stay, or a day clinic.

I'm not trying to demonise her, but when she's been happily playing or singing and then walks in the room and punches her brother in the head because his sitting next to me, the only word I can come up with is spiteful. I also have a serious problem with my knees, if I've said she doesn't like, she will wait until she has a clear shot and boot me in the knees "because I deserve it". I have read tons of books to her, she has 4 bookcases full of books that we read, with a heavy emphasis on relationships and friends, she watches cartoons with a heavy friend theme.

You've received excellent advice already on this thread.

About 10 years ago, a friend lived in Germany and was concerned about her son's behaviour, the German system was for him to see psychiatrists to sort out behavioural issues caused by what they saw as mental health problems and she was convinced his problems were not psychiatric, so she saw an Ed Psychologist in the UK and gave the German school that report on her son's dyslexia which he had diagnosed, the German system had never recognised his dyslexia as they'd concentrated on his physical behaviour only and were looking for psychiatric causes.

Would it be any use to bring your daughter to the UK and have her assessed somewhere like the Lorna Wing Centre? They are specialists in diagnosing girls and women and are internationally recognised.

I'd guess that the crux is would the German system accept the findings and recommendations from Lorna Wing?

If it's a possibility, you can self-refer and they would want to see all her history too which would be very useful. I'd say don't go for the pre-diagnostic assessment, there's no need, just use the full diagnostic service if you want to. They specialise in complex cases and are 'Gold Standard' for the UK.

www.autism.org.uk/services/diagnosis/about.aspx
"We specialise in providing assessments for people with complex presentations in association with co-morbid conditions as well as women and girls who may be on the autistic spectrum."

Co-morbid conditions are things that overlap with autism like ODD, ADHD, ADD, SPD, PDA, Dyspraxia, Dyslexia etc.

Contact www.autism.org.uk/services/diagnosis/contact%20us.aspx

Twitter Feed twitter.com/lornawingcentre?lang=en

Just one more thing, She has extreme anxiety Yes, and the level of anxiety is what drives the behaviours that are telling you she's not coping with the situation, because she's too overloaded to be able to verbalise her distress. The higher her anxiety rises, the more extreme her behaviour will be.
It's no easy or quick task trying to identify the things - triggers - that cause her anxiety to rocket, but when you do, you'll find removing the triggers will result in her being less anxious and what you see as her "bad" behaviour will lessen considerably.

I think you have your answer. The German system hasn't managed to give you any diagnosis code, and the German school system won't work around the SEN as it presents, without a "label". So hope lies in looking elsewhere for some solution to the diagnosis at least.

Lorna Wing has a long waiting list even for private patients so I would suggest you book an appointment for a long time hence asap, even if at a later date you cancel.

We had an urgent appointment on Monday with her psychiatrist, basically all they have been able to see recently is this ODD and right now the oppositional side has taken over, everything right now revolves around it. They are confident there is more to her as they have clear clinical evidence of that, but when she flat out refuses to speak, or even sit in a room its hard to tell what else there is.

Our daughter basically has us on lock down, absolutely everything is being dictated by her and her psychiatrist has said we (and them) need to work on this to be able to move forward. We are waiting for a call from another team who will come to our house and support us here. She has been signed off school and now getting her to the clinic is proving difficult too.

While this Lorna wing sounds promising, I can honestly say it would be down right dangerous for us to even try and get her to the UK, we can't travel for more than an hour in the car without her becoming dangerous, also unfortunately there is an element of how will Brexit effect something like an international patient.

I have ordered most of the books you have suggested, thank you!!

Another avenue that may be worth exploring is some kind of professional support? E.g. I know Hendrickx Associates offer some support services (including by Skype): maybe look at the website and see if it seems interesting? I haven't used them myself, but Sarah Hendrickx is a well know speaker on autism and is autistic herself (as are 2 of the 3 support coaches she works with, all of whom are women), so they would definitely come from an approach of understanding autism in women and girls. The website also links to some of her talks.

www.asperger-training.com/