Unsure of the next step

Hi, I'm wondering if anyone has any advice for our current situation 

I have had concerns over my 6yr old daughter and some of her behaviour and things for a few years but everytime I bought anything up I was dismissed as over reacting.

Some of her behaviours include: an intense rain and wind phobia, waking up at night scared if she thought it was going to rain the next day, sobbing if it did rain etc.

She hates certain noises, if her 18month sister cries, she cries too because she says it's too loud, will jump at the smallest noise such as hearing next door through the wall. She will often put her ear defenders on as she says things are too loud.

Intense tantrums over what appears to be smallest thing or if asked to do every day things such as brushing her teeth or putting on shoes. She will immediately cry, scream, try to hide under the table, kicking and hitting and physically lashing out. She often trys to bargain to get out of doing these things as well

She needs her routine to stay the same, any change causes intense screaming and crying as above.

If she spills anything she cries and if spilt on herself she will immediately try to strip, even if it's a tiny amount

She seems to struggle with understanding other peoples personal space but is very protective of her own.

Towards the end of yr 1 after thinking she had been unlucky with bugs the doctor told us her sickness was down to anxiety, he asked us to do a behaviour diary for a month and at the end of summer referred her to our community paediatrics team, but they returned the referral saying she was showing normal behaviour??

However last weekend completely out of the blue she told me she wanted to die because she was awful and stupid and always got things wrong. When asked who said that she said 'I do, I always get things wrong'. This was said very calmly.

I have since spoken to the school and GP, I have an appt with her teacher and learning mentor tomorrow and the GP wants to see her next week after a weeks mood diary. I asked about a referral as was obviously concerned but was told to wait for a face to face appt

The school have said they see nothing at school apart from her being a little anxious at  times and is a bit of a perfectionist but her headmaster says it is possible for children to mask it very well at school.

After a routine appt for myself with a nurse this morning it was her who suggested that my daughter have a form of autism and to push to get answers for her but I dont know who to push.

I want the GP to refer her again but is Camhs the better people to be referred to whilst also just seeing if I get any further information from the school to help.

Is there any specific questions i could or should be asking the Dr or school to help with it all?

Thank you for reading, I've just realised how long this has become x

  • Hello,

    The page below answers most of your questions. The behaviour you describe suggests further investigation is warranted. I am not a medical professional.

    https://www.autism.org.uk/about/diagnosis/children.aspx

  • Welcome to the forum,

    What you're describing seems to be quite common, and I was somewhat the same myself as a child (though not diagnosed until much later in life).

    When we know we're being scrutinised by strangers, whether it's our classmates or an examining paediatrician, we pull out all the stops to try to behave as "normally" as possible. We're often extremely self-conscious about whether the behaviour we're mimicking will meet people's expectations, and often very uncertain whether we even know what those expectations are. Even if we understand the how, we often don't understand the why. Naturally, this makes us both anxious and extremely sensitive to anything we might be doing wrong. It also makes us extremely tired mentally. After a day of masking at school, we've just got to let go of trying to suppress our autistic behaviours, because we haven't the energy to do it. School and medics see a pupil who is coping with their condition extremely well, while parents can sometimes even feel that their child is regressing (their autism hasn't got "worse", of course, it's just nearer to the surface.)

    There are some good signs in your post. Firstly, anxiety has been identified as a strong component of the problem, and I believe that is correct. Secondly, the headmaster has spoken about masking, so there is some awareness that your daughter is consciously manipulating her behaviour, though the head is maybe less aware of quite how much of a burden this might be for her. Getting the school and paediatrics team to recognise this should be a priority, I think.

    I don't have enough knowledge of the school system to advise you any more about that. However, I would highlight the importance of her having some way to wind down and recharge her batteries when she gets home from school. Try to set aside a period during which she won't have any demands made of her, won't be pressed for too many details about her day, and when she's allowed (within reason) to flap, rock, spin around, etc. if she feels the need (stimming is definitely an innate kind of coping method for stress, IMHO). If you can find some activities which she can lose herself in, so that she isn't ruminating about the events of the day, that will be a great help too. You could say that she needs at least part of the day where she can just "be autistic".

    Best wishes to you and your daughter.