I need answers cause its driving me crazy

Thank you all for your replies, it means a great deal to have all this support. I am just so tired of feeling so lost and even my hubby is starting to notice new things in her. We have just had a weekend of hell and we were both ready to give up but we constantly say that tomorrow is a new so have to just hope. I think I am getting to grips with the lying thing, the pain threshold thing is very high in Dm so I try to be on the ball when she says things hurt. She broke her toe last Tuesday and the doctor said any other child would be floored by it but she is acting like nothing has happened. In regards to her attitude, it is getting worse and getting to the point where we dont want to talk to her cause her replies are horrible. No form of discipline works and nothing makes a ounce of difference. How can I deal with it? How can I tell what her triggers are? I used to be able to tell what was her ASD and what was just normal behaviour but it has yet again changed xx

I remember that now.  I thought she was dying, the amount of pain she seemed to be in!

misskittykat said:

5.  I was told that small children often cant work out where there pain is - I found this out after going to A&E in the middle of the night with what I thought was appendicitis which turned out to be a throat infection!  Also, if she has SPD, is her pain threshold very low?  I'd always err on the side of caution though.

A hospital doctor told us when our youngest was smaller, that when a young child gets a swollen throat/virus, they also get a swollen gland or something in their abdomen so they can get belly ache there from a throat problem.

My daughter has only recently been diagnosed so I might not be the best person to help but I can answer some points from my experience.

2.  My daughter can lie for England!  Sometimes I think she tells a lie and once she's told it, she then believes it to be true.  I know she broke the tv a few years ago (probably by throwing the wii control at it) but she has stuck to her story since telling me 'it just broke, I didn't do anything'.  Also, sometimes she thinks something is going to happen from past experience and then believes it has happened.

3.  My daughter also did this and I think it is down to anxiety.  Its like she waits for an excuse to fly off the handle because of something else she's anxious about.  

5.  I was told that small children often cant work out where there pain is - I found this out after going to A&E in the middle of the night with what I thought was appendicitis which turned out to be a throat infection!  Also, if she has SPD, is her pain threshold very low?  I'd always err on the side of caution though.

7.  I had a similar issue with my daughter.  I think she was often overloaded with the amount of toys (not that she had that many) so would put things away in the loft.  I still find now (she's 13) that she only has an interest in a very few things but also like to revert to toys from younger years on occassion.

jrandall10 said:

Hey everyone, I have a few things that I wondered if you fab people could offer any advice on. Dm is our six year old daughter, she has ASD and SPD.

1. Last year when visiting my dad down South, Dm was wearing crocs and got a drawing pin in the bottom of her shoe that stab her foot. Since then anytime she sees pins she gets really anxious and points at them. I have tried ignoring, redirecting her and comforting her but it doesn't work. Does anyone else get this issue?

Did you acknowledge to her that you understand her fear?  If she feels diverted from it with soothing/distraction, it could make her even more anxious.  Sometimes someone needs to know that you feel their pain otherwise if they don't feel you see the danger they will get more anxious trying to transmit to you that there is a danger.

2. Our learning mentor and sen person at my school where I work have told me that ASD children can't lie cause they don't see the point or understand why you would lie but Dm lies about things loads? What does everyone else think?

That's complete rubbish.  Read what Tony Attwood says about children with AS lying.  It might be in "The Complete Guide to Asperger's syndrome" http://www.peaknt.com/files/The%20Complete%20Guide%20to%20Aspergers%20Syndrome_Attwood.pdf.

3. She also has Dr Jekyll and mr Hyde mood swings that come out of no where and we have no clue what to do. Should we be trying to calm her all the time or just go with the flow?

Are these mood swings or meltdowns?  Meltdowns stem from anxiety, which as she has SPD will mean there are lots of things that could set it off.  Also, even if it's not meltdowns, anxiety can make someone appear defensive and snappy.  If you have identified all her triggers and it's still there, maybe she needs more quiet/alone time to diffuse her feelings.

4. We have realised that we can't expect so much from her cause she just can't cope with even simple things but we worry that if we do everything for her she will never learn or grow to be independent, r we doing right?

It is never bad to encourage independence, even if it doesn't seem to be "soaking in" you might be surprised at how much is.  It's not fair to deny her the opportunity purely on the basis that it doesn't appear to look that way.  Always be positive.  You can never tell what is going on inside by outside appearances.

5. If she can't sleep or wakes up, she won't/can't explain why but will get pain in different places and cry uncontrollably, is this anxiety or something else? What could we do to help?

Are you sure she's not having growing pains?  Has she got any signs of hypermobility (common on the spectrum) http://hypermobility.org/help-advice/hypermobility-syndromes/beighton-score/?  It could be stress-related stomach pains for instance, maybe you need to spell out to her until she gets it, that she is allowed to call out or come to you.

6. I have done a big display on our wall for all her visuals but she doesn't seem worried about them, should we carry on using them?

Keep going with them, as above you don't know how much is going in.

7. She has loads of toys and has no interest in half of them, I say we will sell them which we do but then months later she asks for them. I have no storage to keep hording things but cant afford to keep replacing them either. We try to play with her but she loses the plot. Does anyone else have this same struggle?

We have this problem.  Perhaps instead of buying new toys (until she needs an age/ability appropriate change of toys) you could hide half away, leave her with the other half and then swap them over every couple of months or whenever so she feels like she has new toys again.

Also how can we help her with socialising?

PECS social stories.  Are there any local support groups where you could meet other parents with autistic children so there is less pressure on her to socialise in the NT way, which she will be learning at school anyway?  Sometimes, it's nice to just "be" without pressure, and the socialising needs of someone with ASC are often much less than an NT child, you don't have anything to live up to, get a feel for what she wants.

Sorry about all the questions and massive post but we are stuck

Thanks loads everyone xxxx

Number 2 is a myth, and well.....what do you expect from an SEN person? These people seem mostly to have no training on autism yet pose as having expertise. Most seem worse than useless - like 19th century midwives and wet nurses, that lost many more babies than saved.

What possible reason would there be for this being true? It probably relates to people on the spectrum not seeing a need to lie in social situations, or for political correctness or tact. But that refers to socialisation difficulties, not some magic reason for not lying at all.

If anything the reverse is likely, for self defence.

Mood things might be due to other factors such as bipolar. Do you mean that sometimes she is distressed, due to sensory issues, and at other times she is happy? It is more likely with autism that there are underlying factors that you could look out for and identify.

Regarding 4, it is difficult to draw conclusions at the age of 6.

I cannot comment on the other numbered issues, but I'm sure others will, even if only to reprimand me for my comments!

But socialisation is determined by both spoken and unspoken communication - the latter involving eye contact, facial expressions, speech intonation, nods and gestures. With autism the non-verbal element is always going to pose difficulties, but there may be ways of helping her compensate for this.

And please NAS Moderators, isn't it time NAS took on a campaign about the woeful inadequacy of SEN staff in schools as regards autism. Time and time again we witness the most utter stupidity from these people, and nothing ever seems to get done about it.

The qualification at teaching level is a teaching qualification, which by itself hardly touches on autism. Any direct knowledge dependes on the SEN undertaking research or postgraduate study, and that's probably few of them. With SEN assistants, their knowledge of autism is little if any.

It is categorically wrong that the futures of children with autism should be placed in the hands of such ignorant and inadequately trained or qualified people.