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Does Aspergers get worse? (Intenseworld, your input would be great)

Pink68

Hi, we are on the road to a diagnosis for my daughter (9).  Since we came to the conclusion she may have Aspergers she has been a lot happier in herself and says that she's glad that she knows why she is different and that other people know why she's different.

But.....her 'autistic traits' seems to be getting worse.  I don't know if it's because she feels able to talk about the things now, that she doesn't feel 'silly' for telling me things that bother her. She seems less able to cope in busy shops, when it's noisy at school and things like that. She told me that when she's stressed she feels she wants to hide her face 'somewhere dark' like in a cushion or blanket, or if it's somewhere noisy she wants to run away and hide.

She also says that she's worried about 'everything', when I try to find out what she actually worried about I can't get much out of her.  One of the things she has said that she's worried about burglars coming in at night!

It's horrible as a parent to see her struggling so much, I'm also worried that if things carry on escalating she's going to really struggle by the time she gets to senior school.

  • I'm just appealing the LAs refusal to assess for statement as we speak.

    She's on SA+ but she is still not coping.

    We had a 4 hours meltdown from her last night.

    Her school has a specialist unit but she needs a statement to get into it, which is why I'm working towards getting one (fingers crossed).

    That's good that your daughter will feel like it's not so different when she moves into secondary school with it being so nearby.

  • Awww, sorry to hear that Intense, I feel for you and her.  Does she have a statement?  What is the support like at her school? 

    We're lucky in that my daughter's primary school is right next door to the senior school and run by the same academy so hopefully there will be some continuity. Also they are already in year 5 getting the kids to have some lessons over in the 'big school' and as they are aware of her problems they are going to work more closely with her on the transition.

  • I hope it helps in some way.  I can tell you that my 12yo is cracking up under the strain of having just started secondary school and I wouldn't want anyone else to go through what we are going through with her.

  • Thank you all for your comments.

    I was particularly interested in your view Intenseworld as a Mum of girls on the spectrum and being on it yourself. Thank you for taking the time to reply.

  • Mine has definitely got worse on a subjective level. I have chronic anxiety, stress and tension, which is severe and relentless. As a child, I had anxiety, but for the most part it was temporary and easily allayed. My social issues and lack of empathy were far worse as a child, and I did not mask my issues to such a degree. Self-awareness has developed with age, but it has also resulted in mental health problems.

  • Autistic traits get worse according to the environment.  This would usually be school for a child.  Where there is pressure (remembering a lot of things, homework etc.), a lot going on, noise and trying to fit in with everyone else it creates an environment very adverse to the average person with ASC.

    There may be an element of knowing the likely cause she feels less inhibited at holding things in, because she has a valid reason for her differences in her mind.  Perhaps she feels she needs to unburden them a bit.  In one way, this is better for her assessment as the more obvious her traits the easier it will be to assess.  It can be a bit trickier assessing a high-functioning individual who masks very well.

    Anxiety is co-morbid with the vast majority of people with ASC.  Unless it became so bad that it was severely hindering her day-to-day functioning the NHS is fairly unlikely to consider medication.  It's something you should ask about at her assessment or even see the GP about your concerns beforehand as this can also feed into the assessment process.

    You are right to be thinking of her future, because secondary school is usually even more difficult for a child with ASC.  The expectations are higher, the socialising more difficult (less playing and more conversation), the differences in emotional maturity more noticeable etc.  So getting her assessed is the best thing you can be doing because with a diagnosis doors to support will open and eligibility for things like statement etc. will be a little easier.

    As a condition, mine has worsened with age definitely, but this is down to the same reason - environment, and all those elements mentioned above.

    When she is assessed, ask about alexithymia as she may struggle to indentify her own emotions and put them into words.

  • I found it has, yes. But on the flip side, my brother appears to have become better. (note: he still has AS; but the meltdowns and stuff are nowhere near as bad now)