Is it autism??

I know this is an old post but thanks for sharing your story and I do hope things have improved for your daughter since writing. There are many parents who are having to research themselves and though there are specialist doctors and nurses in place it can still be hard to find the right answers / solutions for your child as humans we are all very unique and different. What can work for one child doesn't generally always work for another. My son had difficulties falling off to sleep and we tried various medications both natural and pharma. We ended up keeping a food diary which I think was very important as we could track incidents also and see if there was any correlation or not as the case may be. Getting the right sleep patterns is hugely important as we found once his sleeping improved this was a major turning point as it had a positive affect on his days so that is always a great place to start. You could try a weighted blanket and this is a good article to read here https://www.snugcosy.co.uk/blogs/articles/autism. We had good success with our blanket and he still uses it today though he has improved greatly now as the years have passed by, the early start to teenage years being the hardest for us all though not too different to most teenagers at that stage in life and can be just hormonal though adding this to the mix with Autism, ADHD, Asperger's etc could be experienced at times like it was throwing petrol (hormone) on a fire (disorder) at times. I do hope things have improved for all of you and wish you well.

Hi, NAS39189!
Thanx for sharing your story! You seem to be a very caring parent and I hope your daughter gets better. My nephew is the same age as your girl and shares the same problems. It was hard for him to relax and he often didn't get enough sleep. As a result, he was tired and even more annoyed. Everything became a little better after they changed the usual nephew's blanket with a special one. They found it here www.melacomfort.co.uk/.../how-to-find-the-best-weighted-blanket-for-autism almost a year ago and since then we can observe significant progress. The better nephew sleep, the better he feels the next day. The tricky thing is to calculate the correct weight of the blanket. For a blanket to give a therapeutic effect, it must weigh within 7-12 percent of the weight of a person. It should not be too light, then the blanket will be useless. At the same time, a person should be able to remove it easily. Of course, I could be wrong, so advise you to conduct your own research. One thing is sure, it's really a good bonus to the basic therapy.

If Amber isn't on the spectrum all I can say is she's doing an incredibly good impression of someone who is. I agree with the advice to seek a second opinion. In particular, girls and women with ASD can be quite verbal. This may be because we're more socialised as children.

One thing which particularly struck me from your message is when you say that noise is too loud for her and which you've dismissed. I've had this same issue my whole life and dismissing it will make it worse for your daughter. Many autistics experience external stimuli in a far more intense way than neurotypical people do. So while the noise level might be fine for you Amber's telling the truth when she says it's loud enough to distress her. It's also possible that she's picking up on sounds you don't hear yourself. I can often hear small noises that other people don't until I mention them. I've had to stop watching interesting tv shows, for instance, because there's been some plinky or discordant sound or music going on. Most people wouldn't notice it but to me it's excruciating - actually physically painful as well as emotionally. It's like someone drilling into my forehead, it has that level of physicality to it. If a particularly bad noise takes me by surprise you can find me curled up in a ball in the corner of the sofa screaming (and I'm not 12 years old).

My suggestion would be to keep things as calm as possible at home. If she doesn't have her own bedroom to retreat to maybe try to provide a space for her where she can be when she needs to get away from everything. If you can get a time when she's calm maybe try asking what she needs from her family to keep her as stress-free as possible. She may not know at that age, but it could be worth exploring what makes her feel worse and what makes her feel better. Maybe you can identify together strategies to help her. The family's worry and distress may be making her feel worse, too, so if you can keep things as calm as possible (difficult, I know, especially with three young people in the home) it may give her some respite.

Good luck getting the answers you need and in supporting each other.

Thank you for your reply! It’s great to get other ideas/ input. I’m going to keep pushing for answers 

thank you 

Thank you for reply! 

Im going to keep pushing for answers. School are brilliant, i don’t know where we would be without them. They have a space amber can go when she needs to. 

Thank you xx

Thank you very much for taking the time to reply! I understand about putting names, that was a misdtake in my part, I think I just wanted to put everything down and pray for a response. I’m going to bang on every door and keep pushing this, and I’m going to ask for a second opinion from CAHMS. We are currently doing family therapy which I think is good because we can get things out as a family but I know this will not “fix” things, as they hope it will, as the “problem” will still be with us. I love my girls and I’m going to keep pushing for answers. Thanks again I really. Appreciate your insight x

NAS39189

Hi, 

I work as a carer with adults on the autistic spectrum and from the way you describe your daughter, she sounds as though she has some strongly pronounced autistic traits and in my opinion is likely to be on the spectrum. Per Trogluddite's advice, do push for a second opinion. It's your daughter's right and the key to accessing more support.

If the school is supportive perhaps they can work with you to pro-actively come up with strategies to support your daughter in the meantime. 

Some helpful strategies could be:

• Take MP3 with preferred music & headphones to school (useful to block background noise)
• Small discreet 'fiddle items' she can carry in her bag /pockets to use to self soothe /'stim' (square of bubble wrap, soft fabric, satin ribbon, squishy stress balls etc..Whatever works for your daughter)
• Aromatherapy oils - Put a calming scent on fabric square or scarf (lavender or vanilla tend to be relaxing)
• Perhaps there's a quiet room at school she can have access to in-between lessons to rest from noise and the constant social interaction. 
• Small sketchpad & pencils / zentangle 'mindful' colouring books 

Working with your daughter I'm sure you'll be able to come up with a list of what helps her relax and what sensory stimulus she finds stressful and distressing. 

Many girls on the spectrum start to experience problems around pre / early puberty when their compensatory coping strategies are outstripped by the increasing social complexity of their female peer group. I suspect this /and sensory over stimulus is what may be happening for your daughter.  Another well-known indicator of ASC is a student is well behaved at school but then having meltdowns once home as all the sensory stress, social confusion and emotional distress of (potentially) being bullied is released. 

To aid sleep, I wondered if she may benefit from playing some white noise in her room at night and perhaps having blackout blinds fitted in her room if it isn't already dark enough. A weighted blanket (the weight she can use is dependent on her own body weight. If she has a small frame you need to be careful about this) may help her feel more grounded and relaxed. 

Hope this is of help. 

Saz

BOOK LINK:

www.tonyattwood.com.au/.../girls-and-women-who-have-aspergers

RELAXATION /WHITE NOISE APP (Android version. Mac version also available online)

play.google.com/.../details

WEIGHTED BLANKET:

gravityblankets.co.uk/

NAS39189 said:

For about 18 months now Amber is getting worse. It just started with crying, not knowing why but she was getting very upset.

If it's sudden onset beginning from around adolescence, it is possible that it's something other than autism (since autism usually starts from early childhood). It is also possible that she is smart and therefore had been able to cope well enough in childhood that it masked her symptoms. Do you think that this is the case or is it more of a recent thing? 

NAS39189 said:

Sometimes she covers her ears and says everything is to loud, when it isn’t.

Does she experiences changes in the perceived loudness even when the volume is fixed? e.g., sometimes the same volume sounds quite sometimes loud? Or is it constantly loud?

NAS39189 said:

when Amber has an episode

Can you identify any triggers that causes her to have an episode?

NAS39189 said:

she screams, like she is being attacked

Are you be able to ask her about this? Does she feel like someone is attacking her? Or why she feels panicked? 

NAS39189 said:

because she can hold a conversation and is very articulate

Since she is very articulate and can communicate well, if she is willing, there are some online tests that she could do to get an idea of whether autism may be a possibility. 

You could try to ask the GP to see if they could screen her for autism/Aspergers. 

If she can communicate with you, it would be useful to discuss when she thinks the onset of her problems began and why. If the symptoms began in adolescence, and if she feels that same sensory input of sound constantly changes, or if she feels like there is 'someone' attacking her, you may also like to consider to ask the GP to screen her for schizophrenia. 

I'm really sorry to hear about this, and I understand how this could be a really difficult experience for your daughter and how stressful it is to your family. I hope you will be able to get more help from your GP and CAHMS to identify the underlying cause. Best wishes.

Welcome to the forum.

Before I get to answering your question, I'll just point out that the forum can be read by anyone with an internet connection, so you might want to edit your post to remove the names, just in case someone can identify you that you'd rather didn't. You can edit your post by clicking the little "More" button below the post and selecting "Edit".

Naturally, none of us here can say for sure, but your daughter certainly has some traits that are common for autistic people; particularly the extreme sensitivity to sounds and touch, the "panic attacks" (or "melt-downs" as many autistic people call them), and her extreme focus on her interests.

NAS39189 said:

I’ve told CAHMS several times that I’m thinking she could be on the scale, but the mental health nurse says no, because she can hold a conversation and is very articulate!!

This is nonsense, and the nurse obviously has poor understanding of autism, particularly as shown by girls, where it can often can appear superficially more social than for boys. Autism is about developing differently, not necessarily in impaired ways; just as some autistic people have big struggles with language skills, others of us develop skills in advance of our age (I could read well before I went to school, for example, but I'm still autistic.) It is also possible to develop some language skills well, but not others. For example, we might know the literal meaning of words, and even have a huge vocabulary, yet struggle with how the meanings change depending what mood the other person is in or what tone of voice they use (this part of communication is called "pragmatics".) Conversations with a nurse are very different to those in day-to-day conversation; it's much easier for us to predict what is expected and it more based on factual information, so this may also have given the nurse a distorted impression of your daughter's language skills.

I think you should point this argument out to the nurse, and if that still makes no difference, you should insist on second opinion from a different professional (this is part of your rights under NHS guidelines.)