very confused

[coolbreeze]

Hi I'm quite new to the forum, my daughter has been diagnosed with ASD recently. I am now wondering whether I have done the right thing. In truth her behaviour was picked up at school which led to a health visitor observing her and referring her. The thing is I think she may be on the cusp, sensory problems, hair brushing, teeth cleaning , sleep difficulties and problems with social interaction etc etc. On the whole she is different very young emotionally but wise beyond her years in other ways. She can play okay in exclusive relationships but often can't cope with multiple friendships if they show preference for each other, turn taking, etc. The thing is she is pretty bright but definately underachieving at school. I suppose I am having a wobble, what if she grows out of this ???? I find the whole assessment very vague can an umbrella of symptoms really be put under such a definate diagnosis. Hopefully I will get some answers from the report. I'm not in denial at all but it is such a big thing for a parent. There are people on here that are not picked up until way into adulhood, equally are there children that are being misdiagnosed ?

Am I just being over anxious and a bit paranoid ?

[baddad]

Hi I'm quite new to the forum, my daughter has been diagnosed with ASD recently. I am now wondering whether I have done the right thing. In truth her behaviour was picked up at school which led to a health visitor observing her and referring her. The thing is I think she may be on the cusp, sensory problems, hair brushing, teeth cleaning , sleep difficulties and problems with social interaction etc etc. On the whole she is different very young emotionally but wise beyond her years in other ways. She can play okay in exclusive relationships but often can't cope with multiple friendships if they show preference for each other, turn taking, etc. The thing is she is pretty bright but definately underachieving at school. I suppose I am having a wobble, what if she grows out of this ???? I find the whole assessment very vague can an umbrella of symptoms really be put under such a definate diagnosis. Hopefully I will get some answers from the report. I'm not in denial at all but it is such a big thing for a parent. There are people on here that are not picked up until way into adulhood, equally are there children that are being misdiagnosed ?

Am I just being over anxious and a bit paranoid ?

 

Hi coolbreeze -

 

Obviously I (nor anyone else here) can begin to hazard a guess regarding your own daughter, but my personal opinion on the general question you've raised is that yes, children are being misdiagnosed and that vague diagnosis based on observation of a few traits is the reason for it. Effectively, I think 'somewhere on the spectrum' has become a stock explanation in medical terms for all sorts of things, and the full diasgnostic criteria is often bent - or even disregarded - to facilitate that. None of the things you highlight are exclusive to autism - in fact, looking again the ONLY factor that is expressly mentioned in DSMIV is problems with social interaction... all of the others (poor sleep, sensory issues etc) are, for want of a better term 'anecdotal co-morbids', and are certainly problems shared by many NT children (which of course social difficulties are as well, but at least they do appear in DSM IV)...

The biggest major difference, I believe, in the long term prospects for children with these kinds of issues is how they are responded to, both locally (by family networks etc) and professionally, because while NT children with (i.e.) sensory issues, bad sleeping patterns etc are challenged and the behaviours corrected in autistic children they are often condoned, justified or accommodated as part of their condition. The consequences of that are always disabling, and also promote further negative accommodation as patterns of parenting, negative reward and negative expectation ('can't do' rather than 'can do') become ingrained for child and parent alike. Put it this way, I've never seen a t-shirt with a picture of a tantrumming child on the front and the legend 'I've got cerebral palsy - what's your excuse?', have you?

 

One other factor to bear in mind is that in the States there is growing incidence of 'undiagnosis', and this is not 'casual' undiagnosis by parents/autistic people themselves. It may well be that this 'undiagnosis' is as flawed and subjective as some of the potential 'false positives' you're concerned about (I'd say that certainly applies when you think of groups like DAN etc and their 'curebie' rallies - but that's not the only area undiagnoses are arising from), but the fact it happens at all is indicative of something being amiss...

 

For now, I'd try to stop worrying too much whether your daughter 'is' or 'isn't'. I know that sounds totally wack, but the reality is if she's just been diagnosed and you've been seeking medical confirmation that something is not quite right and they've said ASD you'll need to show them why it isn't (if it isn't) rather than voicing concerns that they might have got it wrong, iyswim.

 

As far as helping your daughter goes, just do the same things and have the same expectations you would have for any other child (so for (i.e.) sleep establish concrete routines, expectations, sanctions and rewards and STICK to them - there was a v good supernanny on this on C4 last night if you can find it on catch up). If she is autistic or even if just particularly stubborn/determined it might take a bit longer than usual but it is going to be the quickest and most effective solution either way. Work with the problems and find solutions for them rather than vaguely labelling the problems 'part of autism' and letting them, or her, dictate your life, movements, bedtimes, social activities etc and with issues like teeth and hair her own health and wellbeing. The same applies to behavioural stuff - if she wants friends she's going to have to share and 'play nicely'. You might find one or two 'friends' who under the misguided suggestion that they're helping her will further reinforce all of her negative behaviours, but in the long term that will prove very restricting and disabling for her.

 

Hope that's helpful

 

L&P

 

BD

[coolbreeze]

Thanks baddad for taking the time to reply. I understand where you are coming from totally, in my mind can I be sure.... is some of her behaviour the behaviour of a strong willed child testing the boundries or is it a result of 'a condition' an inability to cope with anger and frustrations? So far I have managed to tell her that we see the assessment team because of sleep and other issues like how upset she gets over friendships at school. I have not talked about ASD as I wonder how it will affect her behaviour and the behaviour of other people towards her as you have said yourself. I'm going to carry on as normal, routines sanctions and rewards etc and see how things evolve. I have a meeting today to discuss the diagnosis with the professionals involved, so it will be interesting to see why they have reached the conclusion to diagnose.

Thanks again for your advice.

[Sally44]

From my experience I found 'receiving a diagnosis' very difficult and I felt so guilty about having caused it whilst he was young and had no idea of what that diagnosis might mean for his future etc.

 

However, the difficulties do not go away, and they do not grow out of them.

 

The cluster or umbrella of difficulties mean it is a spectrum condition and no two people with an ASD will be exactly the same because personality, motivating interests etc are different from person to person.

 

The condition also fluctuates from day to day probably due to the level of stress and anxiety the child is under as well as the task demands and the environment.

 

In my experience professionals are often reluctant to name anything and parents can spend years trying to get answers to the increasing difficulties their child has.

 

IF, and it is a big "IF" a child was misdiagnosed, it would be easy to re-assess that child and for them to lose the diagnosis.

 

Getting a diagnosis is hard enough. It takes a long time, usually 12-18 months of different professionals observing and assessing the child. It is not taken lightly.

 

Then after that 18 month wait for the diagnosis confirmation, you then have to start getting support in school for the difficulties they have. If the child is academically able, that does not mean they don't have sensory issues that need environmental adaptation, or may need a sensory diet or integration programme. There will often be emotional literacy and regulation difficulties, social communication difficulties. There can be specific learning difficulties (if the child is capable and yet is not performing), they maybe related to dyslexia/dyscalculia, short term/working memory problems, conceptual problems typical of an ASD, dyspraxia, executive function - planning, organising, sequencing, organisational skills etc. The child will not grow out of these difficulties. They will become more and more obvious as they get older and their differences become more and more apparent.

 

If you don't want her assessed or diagnosed, professionals will be more than happy to go along with that and you could end up with a child that becomes unhappy in school and unhappy with themselves, resulting in low confidence and low self esteem. The child may dramatically under perform in school and the frequent outcome is that the child, once a teenager, cannot cope anymore and either becomes physically/mentally ill due to the inability to cope any longer, or they refuse school. That is a disaster and by that stage you are fighting an uphill battle to get a diagnosis, support, suitable placement before they leave the educational system altogether. It takes YEARS to get the diagnosis and support in place.

 

I know you feel unsure. But that maybe partly due to the fact that you do not know enough about ASD's and cannot see the long term implications of your child's difficulties.

 

You can contact the National Autistic Society and ask to be put on their contact list for their Help Seminars. They are for parents of newly diagnosed children and it gives you a good overview of the diagnosis and the kinds of help you can get, as well as the kinds of difficulties you can expect. You will also meet other parents.

 

You could also join a parent support group where you will see other children with a similar diagnosis. Remember that it can range from a child being totally non-verbal, to someone who is gifted academically - but who still struggles to a clinically significant degree.

[Sally44]

If your daughter struggles specifically with sensory issues, emotional regulation difficulties. Social Communication and interaction difficulties etc. Then those are the needs that should be being met in school either via delegated funding or via a Statement. You also need the EP to investigate WHY she is underachieving. If you suspect dyslexia etc you can take her to Dyslexia Action for them to assess her.

 

You may want your child to have an emotional literacy programme for her to recognise her own emotions and the emotions of others. She may need to be taught some specific emotional regulation strategies. School may need to set aside a quiet place she can go to if upset and she may need a dedicated TA who supports her learning and social communication. Ideally you want this to be more than a "social based" programme, which will not be very good. You want either the speech therapist or the EP to put together the programme and for her to have an IEP with specific targets relating to these difficulties.

[coolbreeze]

Thanks sally44 for all your advice, my daughter has been through assessment for nearly 2 years and has been diagnosed,I am not going to resist diagnosis as I recognize that she has difficulties. I went to the meeting following the diagnosis and they feel it is the social interaction side of things that she struggles with.

 

The school have not been any help at all, and it is getting me down I know there will be a meeting next term where the assessment team will advise the school but at the momment I don't have much faith that they will implement any recommendations.

Not once this school year has the head approached me to ask how my daughter is doing or discussed the assessment (she is the SENCO). The school have been aware for a month that she has a diagnosis and nobody has mentioned anything.

 

This is how the school have handled it so far...

 

I had 2 CAF meetings about 18 months ago

The head arrived to the first saying the paediatrician had been in to assess my daughter that week, I spoke to the paediatrician that day as I had an appointment, yes she had visited the school but not to see my daughter.

 

The second meeting ....in the morning the class teacher (who has now left the school and who first recognised my daughters problems) said I will see you at the meeting this afternoon. She didn't turn up and no apologies were made.

 

I have talked with the the present class teacher about my daughters problems and how unhappy she is countless times, nobody plays with her at playtime etc, how difficult it is every morning getting her in to school ... hairbrushing, teeth cleaning even finding a pair of socks that fit perfectly as alot get thrown off in temper because the seams hurt. The head said she would give my daughter something out of her special box evey week (Friday) my daughter was there.

Well Friday arrived and my daughter came home crying guess what 'nothing from the box'. Monday arrived the same, Tuesday morning my partner had to remind the head and after that, nothing more has been said. The only reference to my daughter was about 2 months ago when the head took me into her room on the eve of ofsted to say that my daughter had been late 3 mornings in the last few weeks, (literally by 5 mins only) she quite aggressively said that the LEA would be on my back if it continued.

 

At the momment I am strongly considering moving her, this attitude and lack of support is awful, but my fears are how would my daughter handle this.

People say it is the diagnosis that is hard to fight for, to me it is the attitude and lack of support from school that is the big issue. I am a qualified teacher myself, with or without diagnosis any child that is unhappy at school should be supported and encouraged. Why haven't they set up a teacher parent contract and reward system.. etc, why haven't they set up a nuture group ??

Why isn't she at the very least on school action ??? All of which I have suggested to the assessment team to bring up in September.

I have bitten my tongue so much I'm surprised it hasn't dropped off, I have been waiting for the diagnosis hoping things would change but they haven't

Edited July 12, 2011 by coolbreeze