Concerned Parents

[Peppermint_Patty]

Hello,

 

After we have had quite a journey with our daughter, we are now happy to have stumbled over this forum and hope to get some feedback whether we are ‘on the right track’.

 

In short, we have a 5-year old daughter with what we perceive to be over-sensitivity. This we observe for some time now (in fact, since she was born). To give some contextual examples:

 

- she overreacts to minimal ‘pain’ (e.g. a minimal scratch)

- she has a lot of sensual problems (does not like certain fabrics, crèmes etc on her skin, couldn’t touch finger paint or dough up to the age of 4, screamed her head of at age 1.5 when her feet touched sand….).

- is emotionally overwhelmed in situations, which do not conform to self-set ‘rules’. In fact, she tries to control situations very often, changes rules of board games, negotiates with us etc.

- she is (was?) sometimes able to concentrate for very long periods, doing jigsaws, literally one after the other, or lined up dozens of playmobil figurines accurately for hours. At the moment it’s the other extreme though, barely able to sit still at the table (tonight the only thing that stopped her was giving her some maths tasks to keep her occupied while eating)

- she had sleep issues right from day one. She only started to sleep through when she was 3, and it’s still hit and miss.

- there are numerous other things, but we will stop here for now….

 

As she was our first child, we have long thought this to be part of a normal development processes. Yet, we have flagged these behavioural patterns to various point of contacts (e.g. NHS, school). The ‘standard’ answer is lack of appreciation, all we get back are same old guidelines for parenting. We are however concerned. We have been thinking along different avenues, including ‘specially talented’ (which has actually been mirrored by some of her teachers under the proviso that it is too early to tell). But then, on the other hand, it’s not like she seems to do anything that is absolutely extraordinary, although our possibility for comparison is limited – as mentioned, she is our first-born child.

 

Yet, taken all this together we stumbled over and read up on Asperger.

 

- Late physical development (she started walking with 13 months but did not turn over as a baby, never crawled, and was a late developer in anything that has to do with gross motor skills – but was ahead in fine motor skills.)

- Extreme physical over-sensitivity

- On the one hand, poor social interaction skills (does not know when to speak, always interrupting, difficult to gauge other’s feelings? But how much of this is “normal” at age 5?)

- Quite advanced cognitive skills (bi-lingual, top-of class)

 

On the other hand, and this is maybe the main question for tonight – she does have friends at school. Even in nursery, she seemed always to be popular.

 

What do you make of this – is it worthwile to pursue this avenue? Where can we get help? We don’t seem to be able to get the message through to the NHS that we need help – yet the situation is desperate. Today, our daughter announced, that she doesn’t want to live anymore – she is 5! Who can we talk to, who takes this seriously?

 

It would be great to get some advice from you.

 

Many thanks

Peppermint Patty & family

[Kazzen161]

Have you spoken to your Health Visitor? If you tell her about your child and that she is saying she does not want to live anymore, then they can sometimes get CAMHS to see her urgently.

[Peppermint_Patty]

Thanks for your reply. Up to now we didn't have the best experience with health visitors, I've tried over the school parent support advisor (not sure this is the correct term) to get access to an occupational therapist to work on her sensory issues, but my descriptions to her didn't seem to warrant any therapy. She seems to just fly under the radar in school and shows her behaviour mainly at home. And it is difficult to get the intensity across to other people who've not seen it. What is CAMHS, I've googled it but it seemed not exist anymore?

Many thanks

Patty

[charlotte]

at may well be things will start to show up at school as she gets older that is what happened with me. could you afford to get a private assessment? where do you live?

[Peppermint_Patty]

Thank you charlotte. It is interesting to know that these things might only show up from now on and not all be there right from birth - at first I rejected the idea of Asperger simply because I thought "but she's got friends and is quite well integrated socially!".

 

We live in the North East. We would be able to pay for a private assessment, I think - how much is this, approximately? And how do you go about it - I wouldn't even know where to start asking.

 

Many thanks

Patty

[Kazzen161]

CAMHS is Child and Adolescent Mental Health Services - it may be called something different in your area.

[charlotte]

i had mine done at the maudsley hospital in london it was about £1400. the national autistic society may know of somewhere nearer to you. if you are doing it privately it is just a question of booking it dont need referral unless system has changed.

[emmasmum]

Hi and welcome,

 

I think you need to see your GP and ask for a referral for an assessment for autistic spectrum disorders. I'm not sure how much research you've done on Aspergers in girls but they do present quite differently from boys and can be better at masking their symptoms and making friends.

 

Print off a description of Aspergers (preferably in girls) and a list of the behaviours you are concerned about. In some areas it is very difficult to get an assessment on NHS for sensory processing issues, but it is certainly worth asking if you can be referred to OT.

 

I would also mention your daughter's comment about wanting to die. My daughter was diagnosed at age 14 and we were referred to CAMHS for the diagnosis.

 

I'm not sure where you live? I'm in Hampshire and we have access to some excellent parent workshops on sensory issues.

 

I hope this is helpful - good luck,

 

Carol