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HFA - Awaiting diagnoses

(5 Posts)
sunshine99789 Mon 24-Apr-17 16:13:26


After seeing Camhs after being referred for the second time, my dd who is 7 has been accepted and will undergo an ASD assessment.

Im getting myself so stressed out as at school she is 'perfect' with the exception of not wanting to leave me and a few tears on the odd occasion, she goes into school fine.

She is 'where she should be' in regards to the curriculum so school dont really have any concerns.

However, the SECOND she is out of school...she is off....Its like she has been all pent up all day and needs to explode!

Im worried that a diagnoses wont be given, Its not that I want her labelled, its just that its taken us almost 2 years for anyone to listen to us and I know its only a matter of time before she cant hold herself at school any longer.

Key points with her-

She is violent, but only to people she is comfortable with.

She is urinary incontinent day and night. (always has been, she is under a clinic and has had various tests...there is no explanation)

She cant stand loud noises/crowds of people

She is petrified of bugs/wasps etc

Her balance is slightly off

She cant hold scissors properly

She had an excellent long term memory but shockingly bad short term memory

She does have some self soothing behaviours

She doesnt like to go to parties

Sbe doesnt like to go anywhere new

If i have told her wr are doing something, I need to carry it out.

She picks up on things and says things tou wouldnt think she would have noticed.

These are just a few but these are the main ones.

Is anyone elses LO similar? is there a chance she may actually get diagnosed with HFA?

Thankyou for reading xxx

imip Mon 24-Apr-17 18:33:35

Hi op, this very much describes my dd. It took about the same amount of time for anyone to listen to us also.

Dd was fine at school. Very compliant, earning the most class points, a role model and used as the well-behaved person to join in social groups for children with challenging behaviour hmm.

The minute that her eyes meet mine at pick up time, she would be in a rage. Up until bedtime. Upon reflection, I just don't know how I coped.

After starting to self harm st 6, she was referred to cahms (for a year previous she saw a child psych at a children's centre that focussed on short-term psych problems - sleep etc.

The cahms we saw was family therapy. In an hour session they suggested autism and referred her on again to the social communication clinic (had anyone listened to me on the first place, I could have saved the nHS a lot of money and my family a lot of grief).

Anyway, I felt for sure she would fool everyone at ADOS, but they completely saw through her. She's nearly 9 now and I'd have to say she seems more obviously autistic to me - more flappy, echolalic? Struggling more socially.

In our borough, diagnosis was based on AdOs, 3di and school observation. They would have also offered a home observation if needed. I do think thrre is a very good chance they will pick up the masks no.

sunshine99789 Mon 24-Apr-17 18:50:15

Thankyou for replying and giving me hope!

I am struggling to cope with her at the end of school, I dont understand how she can keep it together at school!

She can be so violent to her siblings and its so heartbreaking that I just dont know what to do.

The worst thing is, her sister has started to copy her behaviour sad

PolterGoose Mon 24-Apr-17 19:02:39

Message withdrawn at poster's request.

imip Mon 24-Apr-17 19:15:36

I've got 3 other dds - I get it!

Dd is particularly mean to dd7. She hates her, it's breaking my heart. Cahms want us to use a consistent punishment for it, for something across all 4 siblings. In my heart, I know this is wrong as dd already accepts the punishment without trying - it is typical of her. I'd rather delve into why she hates her so much - but I'm not the person to do this, I'm too close to it.

On the upside, dd used to rage every waking hour with us. She is like this now about 50% of the time (can be more, but hardly ever less). It is more the duration of the rages that have shortened, rather than the number. She can be affectionate towards me - that started around the time of diagnosis. At first it was stiff and felt fake, but it now feels more genuine and natural.

She still threatens to kill me and family members regularly, self harms and smashes things. She pulls out her eye lashes and possibly has OCD (hoarding type).

We can also get to school with much less effort than in the past.

Ipsea also recommended the above Nasen guide to me.

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