My Daughter And Asperger's

[Upsy Daisy]

I’ve been planning to post this for a few months but have been struggling to find the wording.

 

The last year has been quite turbulent for me and my family following my older daughter starting high school last September. If you bear with me I’ll explain my experiences and hopefully you’ll understand why I am sharing this on FSF.

 

C was looking forward to high school but on her first day there she realised that she couldn’t cope. We went half a term of coaxing, bribing, blackmailing and forcing her to attend before she began to refuse to go altogether. She was apparently developing school phobia for which she was referred to a clinical psychologist. I will miss out the details of the confrontations with the school who thought I was an inept parent, the hours of worry and sleepless nights and the endless battles and meetings to get her adequate school provision. Suffice to say we went through hell as a family and her mental well-being gave us and the professionals great cause for concern at times.

 

In March the psychologist diagnosed Asperger’s syndrome and in June she was given a place in the mainstream Autism base in her school while she undergoes a statutory assessment of special educational need.

 

How is this relevant to Early Years?

 

Part of the diagnostic process is to go through the child’s developmental history and doing this showed me that there have been signs of Autism since C was a baby if only I had known what to look for. Perhaps if I can share these signs on FSF some other children may be picked up and helped sooner and need not go through what happened to C.

 

C was a demanding baby who slept very little but hit all her milestones, especially speech, very early. She didn’t like loud noises or busy environments and never got over separation anxiety.

 

At pre-school she preferred to interact with adults, do puzzles or read books but would play with other children if she was asked to by adults because she has always been extremely compliant. She never wanted to attend but appeared to be fine once I had left. She copied the other children’s levels of competence in order to blend in (pictures brought home from pre-school were developmentally well behind those drawn at home and she pretended to be unable to read and write).

 

Starting school was very upsetting and she still used to cry and cling on to me, pleading with me not to send her when she went to middle school. She cried herself to sleep most school nights for years.

 

Once at school she would again appear to be fine once I had left. She chose to take books into the playground, preferred to work alone in the classroom and tried very hard not to call attention to herself ever. She was very academically able but would never put her hand up to answer a question. She would cover her ears when the bell rang and cry when the other children became raucous. She hated the last day of term when they had to play with toys – she preferred to be working quietly. She found it very, very hard to concentrate in noisy environments.

 

If she felt ill or hurt herself she often would not tell a teacher and, if she did, would never say anything a second time (when she broke her arm at lunchtime she didn’t express her pain until she came out at the end of the day). She would always find having supply teachers very distressing but again the tears dried up once I was out of sight.

 

C was never a popular child and was bullied for two years but would only talk to me about it. I tried to address it at school but because they saw no evidence of her distress it was not dealt with until she lost her temper and bit the other child – the only time she has ever been in trouble at school. She was not included in playground games but appeared not to mind. She rarely had party invitations or play dates but I just thought that’s life.

 

I have now discovered that she wasn’t fine in pre-school or school and she has been left with some horrible mental health issues which are now being unravelled. Her inability to express her emotions meant that her needs were not met over the past nine years of her school life. She was deeply traumatised but unable to share it.

 

C’s reception teacher has asked me what she missed. What signs were there which were overlooked? I’ve been thinking about this and reading a lot about Asperger’s in girls. It turns out that C fits the profile of many girls with Asperger’s and they are often not diagnosed until they move to high school. This is because they tend to be introverted and put a lot of effort into conforming and blending in with their peers. High schools are just too big, noisy, unpredictable and confusing for them to cover it up any longer. What I’ve described is only a very small part of her difficulties but I’ve tried to choose what might be relevant to you as Early Years practitioners.

 

So, if you have a child in your care who sounds a bit like my C, maybe, only maybe, it would be worth looking a little closer. Some close observations on her (or his) social interaction or a little extra time to chat and listen might just mean that he or she can get support a little sooner and prevent them going through what C went through. It won’t be easy because the system doesn’t work well for children who don’t lash out but it could be worth it.

 

If you’ve read this far, thank you for sticking with me. I hope you have found it worthwhile.

[JacquieL]

Hello Upsy Daisy and thank your for sharing your experience and drawing this to our attention. You are absolutely right in saying that Aspergers is much more difficult to pick up in girls because of the way they interact with people and the environment, and they hide it well. You are not alone in the way the school seemed to blame you for the problems, which is soul destroying isn't it when you know you are a good parent and this is something over which you have no control? My daughter has ASD and I can remember her seeing a speech therapist when she was four, who blithely told me that I obviously never spoke to her and never sang rhymes or told her stories!!!

Autism/Asperger awareness is a really big issue, and so are the problems of mental health in children on the Autistic Spectrum, mainly because their needs are not recognised and acted upon, or acted upon inappropriately. A complex environment such as a secondary school will be very difficult for your daughter to deal with without the correct support. I think it is very difficult for neurotypical people to try to put themselves in the place of someone with an ASC who is wired in a different way. The sooner a child is identified as being on the spectrum the sooner something can be put in place to try to avoid too many future problems. It is so much more difficult with Aspergers's as the child is of normal intelligence.

I expect you know that the NAS are campaigning for the 70% of children with autism/aspergers who have mental health problems, so that they can have access to professional who understands the condition. There is a lot of information on the NAS site which is useful for practitioners as well as parents. There is also online training here http://nationalstrategies.standards.dcsf.gov.uk/node/289529

We seem to have a group of members about to embark on an OU module as well

 

Lots of hugs for you Upsy and your family.

[Upsy Daisy]

Thank you Jacqui,

 

You're clearly quite an expert.

 

C's school's attitude has been very upsetting but I'm learning to be thicker skinned, as you seem to have to when you are the parent of a child with SEN.

 

C has been very, very lucky in that she has two clinical psychologists and a psychiatrist who understand ASD very well and have worked very hard to find ways to help her. I know that many children with ASD are not that lucky and I hope that the NAS campaign is successful in improving this. I dread to think where we would have been without their expertise.

 

I have been really pleased to see the OU modules being discussed on here and I think that was what finally gave me the nudge to share my experiences.

[JacquieL]

Not an expert at all really but just been on the treadmill with my daughter for 30 odd years. Things are better now in term of early diagnosis, but they weren't a long time ago, and in those days it was still seen as the parent's fault! There's still a long way to go, and a lot of adults out there whose difficulties have never been diagnosed.

[sunnyday]

Thank you so much for sharing your experience............this can only be a positive help to all FSF members.

 

I am glad that C is now (at last) getting the appropriate help.

 

Thanks again and the hugest of hugs to you and C xxx

[Helen]

How brave and incredibly thoughtful of you to share your personal experiences with us. I've learned such a lot reading your post and I'm sure it will encourage us all to be more reflective when considering the needs of children in our care. I wish you and C well.

[Panders]

Thank you Upsy Daisy - the little girl we had at pre-school with ASD has now moved on to Reception class and for us at pre-school we had certain pointers to begin with along the lines you have highlighted - particularly sounds - G was very very upset by certain sounds and when the children did whole group things such as P.E. or party type games would become very excitable and needed one to one support particularly at those times. G also had echolalia which was what really made us seek help in the first place from Specialist Teaching Service last September. It did take a few months to get appointments sorted etc. but the early support she has been given has been good.

 

It was our first day back today after the holidays and we really missed our cheeky G. I will keep in touch with mum - just to see how she is settling in Reception - whilst we have had transition meetings etc. you never know just how much knowledge we have which hasn't quite been taken in by the new setting.

[HappyMaz]

I think the best experts are the parents who support their children through all the ups and downs, and through the attempts to get support and/or a diagnosis, so I think you are an expert Jacquie, just as Upsy Daisy is fast becoming an expert too.

 

Thank you so much for sharing some of C's story with us here on the Forum, Upsy Daisy - as you know I can think of several children I've worked with over the years whose experiences chime with C's and whilst each child is an individual, when reading your post it is almost impossible not to think back to these children's time with us at nursery and wonder if we did enough, early enough.

 

So your message is very timely as we start a new school year, and is something to store away in the back of our brains for future use. If you can 'tip the wink' to any of us on here who need it by recounting C's journey, then this is another part of the gift that C has given you, us and the children we work with.

 

I know this wasn't an easy post for you to write, but I am so grateful that you took the time. I am not worthy.

 

Mx

[louby loo]

Thank you for sharing, and I hope things improve now for both your daughter and the whole family.

 

Your experiences also highlights the need for Early Years Practitioners to have more recognition for their 'expertise' with their age groups. Often after years of experience you do start to notice ' subtle different patterns of behaviour', however if we try to raise these issues with other 'professionals' we are told we are overeacting and its all just a part of normal development.

 

XX

[Guest]

Thank you ever so much, Upsy Daisy, for your very interesting post.

 

I'm so glad you wrote all that down (it must have been very hard for you) but I know that I (and many others) will take note of the pointers you discussed and this will all help us to care and provide for the children we teach. You have helped us all.

 

Hope that C is now more positive and happy at (her temporary) school

[Guest]

Upsy Daisy - Well Done!

 

A long battle, bravely fought, to get C the support she needs - she's blessed with a Mum who's not afraid to tackle the powers-that-be head on, putting in hours of research to do so!

 

Thank you so much for sharing your hard gained knowledge and experience with us.

 

Onward and upward for you and your family now!

 

Nona x

[Guest MaryEMac]

Thank you for sharing Upsy daisy, it must have been so hard for you to write this down. It has certainly given us food for thought. Pleased to hear that your daughter is finally getting the help she needs.

 

Mary

[SmileyPR]

Dear Upsy Daisy & JacquieL for sharing your invaluable personal experiences. It is sad to know your daughters had to go through so much before the correct diagnose was made. Please keep guiding us so that we can help these precious little ones on time and make their futures an easier one. Thanks a million for sharing!

[suebear]

Just wanted to add my agreement to what's already been said. It's very considerate and thoughtful of you to share your experiences, it can be extremely hard to record it due to the emotion involved. So, I basically just wanted to say thank you, the more things are talked about and discussed then better awareness and support for all.

 

I hope things continue to improve for your daughter.

 

Suebear x

[Guest]

Don't want to read and run...*hugs* you must have had an awful time lately and putting it down in writing takes courage. I'm sure we have all learnt something from your post and hopefully we can help more children earlier on.

[Fredbear]

A huge thank you to both upsy daisy and jacquie l for sharing your experiences and knowledge and having the strength to do so on here.

I do hope that your daughter and you as a family get the support that you are all so deserving of.

 

This is a fantastic forum to enable fellow practioners and caring people out there to support each other, and learn together.

Big hugs and thank you once again.

XXXXXX

[Guest]

thank you so much for sharing, it was really brave of you, and I hope you and your daughter carry on getting the support you have long deserved xxxxx

[redjayne]

Would like to reiterate the thanks of others , an insightful and really helpful set of posts, am only sorry C went through so much but hopefully now she will make progress. The issue with both Aspergers and other autistic traits is often that professionals seem reluctant to 'diagnose' until a child is 6 or 7, even if as early years professionals we voice our concerns. In the past five years we have recognised 4 children in the setting, due to various clues,and in depth observations and support, but when concerns have been shared with other professionals and schools alerted it has been ignored at best, or pushed to one side. Each of these childrens has suffered badly at school, and subsequently been diagnosed at the top end of infants/year 2/3, thats three years plus where they could have got support if only people had taken more interest in what we had been saying, and respected our judgement. It leaves myself and my staff upset and frustrated and parents very annoyed as well, as in all cases the parents agreed with our concerns and had to pressure the schools to listen.

[Upsy Daisy]

Thank you for all your lovely replies - you made me cry!

 

It is really common for concerns to be dismissed and children to be left without support which they desperately need, especially when they are not being disruptive and aggressive.

 

I've made friends with other parents of children with ASD since C's diagnosis and realised that the systems are stretched to breaking point in many areas which means that parents have to shout very loud to get any support for their child. Having the support of those who care for and teach their children adds to the strength of their case. It can also help emotionally to know that someone else believes what you are saying.

 

I have had a difficult year but I've also come to realise that what I've had to deal with is nothing in comparison with many, many parents of children with SEN. I am definitely still very much one of the lucky ones.

 

I'm also very grateful that C's experience has enabled us to recognise the same symptoms in her little sister much earlier and she is undergoing assessment in plenty of time for her to have the support she will probably need later on - every cloud

 

Thank you to everyone who's taken the time to read my post. It's good to know that it might help make a difference to a child in one of the settings out there.

[eyfs1966]

Thank you for all your lovely replies - you made me cry!

 

It is really common for concerns to be dismissed and children to be left without support which they desperately need, especially when they are not being disruptive and aggressive.

 

I've made friends with other parents of children with ASD since C's diagnosis and realised that the systems are stretched to breaking point in many areas which means that parents have to shout very loud to get any support for their child. Having the support of those who care for and teach their children adds to the strength of their case. It can also help emotionally to know that someone else believes what you are saying.

 

I have had a difficult year but I've also come to realise that what I've had to deal with is nothing in comparison with many, many parents of children with SEN. I am definitely still very much one of the lucky ones.

 

I'm also very grateful that C's experience has enabled us to recognise the same symptoms in her little sister much earlier and she is undergoing assessment in plenty of time for her to have the support she will probably need later on - every cloud

 

Thank you to everyone who's taken the time to read my post. It's good to know that it might help make a difference to a child in one of the settings out there.

 

I too have just shed a tear reading this thread. I also have an Aspie con, who also has ADHD and a daughter who has a diagnosis of ADD but is now thought to be borderline Aspie also. These kids have a hard slog through school and it is very hard to try to stay strong as a parent through those difficult times. However, awareness is all and reading this thread it does appear that there are some fantastic early years teams out there who know exactly what to do and how to recognise the signs.

My personal experience makes it much easier for me to spot issues early, but trying to persuade the necessay professionals can be quite a challenge. However, my advice to all of you who have concerns about a child is PERSISTENCE. However, we are in a difficult position in Early Years, requiring the permission of parents before we can do anything (and this can be an ardous task with parents who, very understandably, don't want to recognise that thier child has any difficulties, and then working to persuade the necesary professionals that the child does have additional needs. However we owe the right of early intervention (vital) to all these kids and must must must ensure that we get them all the help we can.

Edited September 7, 2010 by eyfs1966

[Guest]

I also have been going through the diagnosis procedure for last 6months after Senco at secondary had concerns about my son, he also has been diagnosed with Aspergers. But as an EY worker since before he was born. I raised my concerns to lots of teachers, Doctors etc and was always told he was fine.

 

But he also has Dyslexia and this his Senco thinks was masking ASD.

 

In the last year I have seen 4 children I have concerns about but only because they have similar behaviour to my sons

 

But I agree diagnosis would be better earlier but lots of people just think the children is either really compliant and well behaved or naughty, There is not enough training on it, especially with girls

[Upsy Daisy]

I thought I'd share the news that I opened the post this morning and found a draft statement of SEN allocating her a permanent place in the Mainstream Autism Base.

 

What a relief!!! :( :wacko: :rolleyes:

[HappyMaz]

What a relief!!! :( :wacko: :rolleyes:

Probably an understatement! (ooh, if you'll pardon the pun!)

 

Well done you - hope C is over the moon!

 

Mx

[sunnyday]

Great news!

[eyfs1966]

Fantastic news

[Fredbear]

Great news for you all hooray:1b

[Guest]

Thank you for sharing this with us all, it must of been so hard for your daughter, im so pleased you have now got the support you need! thanks again and good luck to all your family for the future.

[Guest]

YAY!!!!

 

That's great news - all your reading, research and perseverance have paid off. Well Done!!

 

Nona x

[Panders]

onwards and upwards - great news

[SmileyPR]

I thought I'd share the news that I opened the post this morning and found a draft statement of SEN allocating her a permanent place in the Mainstream Autism Base.

 

What a relief!!! :( :wacko: :rolleyes:

 

CONGRATULATIONS :unsure: !!!