Hi Everyone, 5 year old, autism,aspergers, confused

Hi ccollier, 

I have always know that Skye from a young age was not at her age level. Skye was always behind in development, from learning to walk, talk etc she was always taking longer than other children her age. But when mentioned to Doctors , they would say she will catch up but now she is 5 years old and still having problems. 

Even when Skye started walking , I knew that she was not walking correctly her right foot would turn in but when mentioned to health visitor she said there was nothing wrong. Only when she went to school they noticed what I have been seeing all along.

She has low muscle tone in her legs, which we thought was causing her to fall alot but her muscles are a bit stronger and yet still falling over.

I worry about school, if they are going to make the effort to help her. I don't know what they are doing in school at the moment as communication from them lacks. I worry about her not being able to retain information, she isn't able to process language properly. Speech and language have decided to test her to  see if she has the same problem with numbers.

She recently has started to hit herself when I take her out. When I tell her no she isn't getting something she will hit her face. But it never last for long. She lacks concentration,  can't stay focused.

I worry what this means for school. Her new teacher and deputy head teacher said it didn't strike them as Skye having autism. That she wasn't what they would expect a child with autism, aspergers to be like.  

I'm sure the Doctor wouldn't say she believes she has it if she wasn't sure on it. 

2 months waiting time till Skye starts to be assessed and I am looking foward to it.

I stay in Glasgow :)

I think I will look into going to sone of these groups ad I believe it will be beneficial :)

Thankyou for replying x

Hi Lisa, our daughter is coming up to 3 and we are going through the assessment process at the moment. I know how you feel, because although I've know since 18 months old that there was a problem I'm still struggling to get my head around it. I live in Rossendale Lancashire and have found some good resources in this area. I don't know which area you live but if its nearby I'd be happy to share what I know. Also, see if you have a local Portage service. You don't need a diagnosis and can self refer - they are great. They work on the targets that you want to achieve. At the moment we are working on turn taking and increasing attention span but they will work on anything you ask. They are also a great service to signpost you onto other helpful resources. 

As a Mum that understands, I'm happy to chat anytime x

I agree,  once a diagnosis is done then I know were I stand and how I can best help her. I guess it's good that it getting assessed at this age rather than later. I look foward to the assessment as then I will know more.

Thankyou for speaking with me I feel alot more at ease and I have a better understanding.  Thankyou xx

One thing to say, and i'm sorry that i haven't talked about the quation before mow, but a diagnosis of autism can be a good thing. It can mean that there is a lot going on in her head but that she is a bit cut off from the rest of the world. The same can be true if she has hearing problems. Anything that isolates someone can get in the way of learning but she may catch up in her own time. There are lots of people on this forum who have a diagnosis (i.e we're autistic too) but have got degrees and all sorts of other qualifications and skills. It sounds as though she is bright and doing stuff in her imaginative world. It'll probably take an extra special  effort to get through the barriers but i expect that it'll be very rewarding when you get there.

:-)

Not really, sometimes  she complains to tummy ache but not really been looked into yet. She seems to go to the toilet normally from what I can tell xx

The melatonin sounds as though it is really helping her get a good night's sleep. :-)

if she has auditory problems then that will make everything difficult for her. It sounds that she has her share of issues.

does she have issues with food, digestion, constipation or looseness? 

When Doctor mentioned blood  tests, she said it is for multiple things. It may show why Skye struggling in school, thyroid, etc

As for the melatonin this due to skyes energy levels not dropping at night. I put her to bed at 7pm but won't go to sleep till 1 am. She didn't seem to get tired, she would just continue to play in her room in the dark. The melatonin is to help her fall asleep at night.  I give her it at night at 7 and Skye will be asleep for 8pm now. She will see Skye in 6 months to  check if Skye needs a is to continue the prescription.

I recently spoke with Skyes speech and Language therapist and she said that Skye is have auditory problems, difficulty understanding language and can't retain information. She is also having learning difficulties. There is alot going on at the one time with her. She is only 5 yrs old and in primary 2. 

Outraged, that is the US stance on melatonin. The blood test could be all sorts of different things - it sounds as though Skye has a few things going on in her healthcare.

As with any medicine it is good to understand the pros and cons and the gp should advise whether this is a long term medication or whether it is to get over a bad patch.

Melatonin is an unregulated dietry suplement, not a regitered pharmaceutical. Blood test probably to monitor blood toxicity as a result. Wiki

Thankyou for all the information as advise, it makes me feel better when I know more I find out. 

What is the assessment like ? 

Skye is also getting sent for blood tests,  what is the purpose of this ? 

Thankyou

Following my comments about diets and additives. There is a really good page at www.researchautism.net/.../our-evaluations-interventions

This lists various interventions and proper opinions, based on evidence, about whether they work according to proper scientific research. Note that it rates the melatonin intervention that your, son has been prescribed, as having "Strong Positive Evidence"

The food intolerance interventions do not yet ( and may never! ) get enough evidence to get a high ranking here but some people swear by them. For an introduction go to fedup.com.au/.../introduction-to-food-intolerance-3

Personally I have found that I definitely have something called Oral Allergy Syndrome. This certainly plays havoc with my digestion and I believe it may affect my Aspergers.

I hope you find something here that has some effect on your son but, as I have said before, there are no guarantees and we are all different.

I tend to pace a lot in order to release some of my excess energy, and still slip into my own 'imaginary world' when not actively engaged in an activity. I also have a really hard time sleeping, it seems I'm naturally nocturnal. Left to my own devices, I'll fall asleep from 1am-3am then get up the following day at whatever time I have to be up, and the cycle just continues. But, I've been able to have a more restful sleep when I have some music playing in the background, usually something soft and calming with the same song on repeat, as I find it hard to imagine 'action sequences' in my head when theres something calming being played.

Another aspect that helps is that I sleep in a hammock. Initially it was just to try and help me nap more when I was only sleeping about 3 hours a night, but in the end we got rid of the bed altogether as I never ended up in it. The rocking motion is very soothing and helps me to drift off, whether I wear myself out by swinging from side to side or the swaying sends me off.

If your daughter is one of the kids who fell asleep in a pram or the car a lot, then getting a hammock (or a swinging chair) might prove useful. If you do decide to invest in a hammock, I'd advise you invest in a 'double', as there's more fabric and when you lay in it, the sides are steeper, making a fall less likely. I've even got a weighted blanket my mum made me to stop me 'wriggling' too much as I used to move about lots in my sleep, resulting in me waking up exhausted anyway even when I did sleep.

Good luck, I hope things work out.

Thankyou for the information and help :) I really appreciate it x

For me, the dark has to be a total blackout, even moonlight can be enough to disturb me. We made some blinds out of special blackout material and it has helped me get a good nights sleep. We have just learnt to put them up for the full moon that is up at the moment!

food issues are common - apparently we have more issues in this department than normal people.

Autism doesn't develop or go away as you get older. It can cause complications if people don't learn how to deal with it. there is a lot of support available so you don't have to deal with all of this on your own.

Her room is always kept dark, however she would just go into her imaginative world and still play in the dark. Sometimes she will recite conversation she has had a school. Skye is able just to play by herself even in the dark. But the tablets the doctor gave her has help alot to get her to sleep. However,  I feel guilty that I am helping to put her to sleep, instead of her just falling asleep. She wasn't sleeping till one in the morning. I notice that when the sun does shine I  the morning  she  wakes up.

I am unaware of sensitivity to food additives,  I will have to look into this.

Will more symptoms develope as she gets older? I look foward to the full assessment but at the same time worried at what this means. I hope school can support her appropriately now and help her with her learning difficulties. 

Thanks for replying back

Hi,

welcome to the community. Sleep is a common problem for people on the spectrum. One cause for this is that we can be very sensitive to light or noise. does your daughter have really thick curtains that keep her room really dark?

are you aware of the sensitivity that some of us have to food additives? Sometimes a change in diet (e.g. Cutting out bright orange drinks etc) can help settle a child down.

one of the things to be aware of is that there are many differences in our conditions. Some people will respond to something but others won't.