Closed doors - nobody seems bothered

No need to apologize socks. Anyone who knows you knows where you are coming from and I'm sure no offence is taken.

I concur with your suggestion, but as with most things ASPIE & AUTIE, it often has to be a multi-pronged approach.

Some of the best advice I've ever recieved has come from complete strangers or an unexpected source and often contains the most simple solutions. When you become so immersed it's hard to see the wood from the trees i guess.

We all need a helping hand. :) Have a great weekend one and All! :)

Apologies for coming across a bit heavy. This is one of the issues that brought me into conflict and the diagnosis. I suspect that many of us on the forum manage to say things badly or pedantically or overbearing. Perhaps i should put a disclaimer on the bottom of all my posts in case of offence?

I often concur with your advice too. :-)

To me, the manuals can provide some help when dealing with the triad. If you don't deal with the fundamental issues of communication then you won't get very far. On top of this we are all individuals so we have unique problems. For some people the issues of ADHD or sensory issues have to be dealt with before the triad but the triad has to be dealt with at some point and the books can help here. This is particularly true for people who haven't come across the syndrome before. For example mo4b has had extensive experience with normal children but has stumbled when confronted with an autistic child. 

Socks,

I often concur with your advice, but it did come accross as a little heavy.

Yes we all need help. None of us are perfect as parents, but when you see a parent at the first stages of asking for help, it's not always appropriate to look at it from the professionals standpoint.

In my experience, If a parent is being ignored, the chances are that it's either because of inexperience by the person assessing the situation or by prejudice.

Given your experience, If your son or daughter was dismissed on your request for further assessment, you would; I'm sure, be really upset.

Their are manuals, but they rarely relate to individual situations and as simple as it is to meet one person on the spectrum, thats truely all you have met. One person on the spectrum.

I know you are not suggesting courses should stop anyone pursuing diagnosis, but even pursuing an assessment is difficult these days.

The truth is that support for the child is key and thats all that matters.

Yours respectfully,

Coogy

I'm confused by Coogy's suggestion that there are no manuals. There are lots of books/manuals on parenting an autistic child...

www.amazon.co.uk/.../ref=nb_sb_ss_i_1_13

I'm not suggesting that the parenting courses should stop anyone pursuing diagnosis and any extra help that they can obtain. Instead, I would suggest that you should draw on all resources available to help work out how to help your children. i.e. Take a parenting course AND read all you can about the condition AND fight to get the support that you can get etc etc

Great post coogybear.

Too the op stick at it,winge till smeone takes you seriously xx

In my experience parenting has been more about listening to gut intuition than following rigid rules or attending classes. Their isn't a manual for bringing up a child, NT or otherwise.

My mother, God rest her, was a lovely person, but a terrible parent. She had tremendous intuition, but due to others input and deep issues with self belief she struggled greatly.

At age 2, I weighed 7lb's. Imagine that in this day and age. Social services would have removed me from her care way before I was 1.

Parents like my mum (Who incidentally, almost definately had ASD, needed support, but never asked for it.) If you feel you are one such parent, then do accept their offer. Parent's who believe something is wrong however, and ask for help, but are ignored either due to prejudice or inexperience, are in my view not those that need parenting skills courses.

I'm pretty sure I developed my mothering instincts from another family member who brought me up, but like my mum, I also had a feeling something was wrong with my children. The difference is, that I acted on it.

I battled on, despite no knowlege of the condition, just to have my kids assessed. As it happened, I was right. Their was something wrong.  

Did I doubt myself? Absolutly! Did I beat myself up, every time I was fobbed off only to be proven right in the end? Most definately!, but the truth is, that the sort of things parents do to help their kids are almost always using common sense or some form of intuition.

At no parenting class did I ever read that to sooth a fretful Autistic child at night, I should remove the teashirt i'd worn all day & wrap it around a warm hot water bottle and let the child gleen comfort from my scent. I just did what worked for myself and my child.

Often, the most useful nuggets of parenting gold, come from the heart of a mother or parent who is at their wits end & has exhausted all the tricks in their repertoire. None of us are perfect and when faced with the torture of sleep deprivation or a child in deep angst that we no longer know how to help because we can't think straight, is when we turn to a friend or forum and the most simple and obvious of suggestions are put forward that work.

I'd have loved a manual. :) Keep an open heart, but do what you feel is right for you and your child.

My belief is that a parent with ASD, has a unique insight into the trials and tribulaions that a child on the spectrum experiences. If you have experience of family members who have the condition and you recognise traits, then stick with what you have a gut feeling for. It takes bravery to stand up and demand to be heard.

Good Luck 

Coogybear

Can I ask you if you are 100% perfect parents that can't possibly learn anything more about parenting an ASD child?

Could you not accept the assistance offered by the parenting classes? As a late diagnosed aspie, in hindsight, my parenting skills weren't great and we learnt a lot the hard way. Learning things the hard way means that ultimately the kids are the guinea pigs in our learning and they can suffer more than they should.

Parenting an ASD child is also harder work and more difficult than parenting an ordinary child. I would think that you could benefit from every possible skill at your disposal when doing this very difficult job.

No GP doesn't need to refer, you commission independant proffessionals to assess your sons needs. Follow my advice with writing down all the traits you witness though and send it to each assessor in turn along with the reports you recieve from previous assessments. This comprehensive list may help.

www.autism-world.com/.../

High functioning doesn't mean he doesn't have Autism/ASD. Just because he's where he's at academically, doesn't show the whole picture and teachers often overlook that.

Who you see depends on where in the country you live, although having said that I've travelled miles to get my kids assessed by the person with the correct experience. Each field, OT, ED Psych, SALT etc has their own register. Start with the most important for your son first. eg. 

www.bps.org.uk/.../find-psychologist

These assessments don't come cheap and are just as much about rulling things out as they are about identifying difficulties. If they show he has needs, once you are armed with the evidence by way of the reports you need, return to your GP and insist on and assessment for ASD. If he refuses show him your evidence and he will have no option.

Being taken seriously is a common problem discussed on this forum. Don't take it personally, many have experienced your difficulties.

If you need any more advice just ask on here. People are really helpful.

Good Luck

Coogybear

Great advice, who would the independent people be? Would a GP still need to refer?

Hi Bongo,

You may find this advice helpful. Not all of it will apply, but disguard whats not relavant.

Quote: 

With regard to people telling you 'it can't possibly be', I would ignore it all.

If your gut reaction as a mother or parent is that their is something wrong, then the chances are, you are right. Well meaning or dismissive comments from others can be very damaging in the long run and may cause you to second guess yourself. That generally leads to self reproach and a shed load of guilt for not following your instincts, which isn't helpful. Use your anger constructively and channel it into getting her the right support and diagnosis.

I've attached a links which maybe of some help. It's outlines a presentation by a female with the condition, surrounding Anxiety for children and young adults in the educational setting (43 min.)

http://www.youtube.com/watch?v=rPD_yzMHJls

In looking at the diagnosis element it's important to consider the 'whole Picture.'

I found it easier to write down what I witnessed. I never researched ASD beforehand, I just wrote what I saw and experienced when looking at my sons behaviours. (I have two diagnosed as on the spectrum.)

By everything I mean: How they hold a pencil, their dyslexia, how they sleep, their co-ordination problems (Fine and gross motor difficulties) Word finding difficulties, litteral interpretation, social interaction with others, obsessive interests, repetative behaviors, stimming behaviours, anxiety levels and triggers, auditory sensitivity, touch sensitivity, food intollerance, light sensitivity, extreme reaction to certain smells, health problems, orginizational skills or lack of them, obsessive behavours etc, etc.

This was all backed up by independant OT reports, Speach and Language reports, Ed Psych reports etc. In my experience waiting for LA support was a waste of time and I didn't realize that often the reports have a ceiling level. Meaning that they only go up to 16 years of age and then you have to move to an adult service.             This is a whole different ball game.

The truth is that by looking solely at the mental health element through CAMH's, you are probably only looking at a fraction of the issue. Many behavioral difficulties which are expressed have their roots in sensory processing and cognitive understanding. Looking at the cognitive element of a persons difficulties is important and will affect their behaviour, but managing some of the other issues would also be of a huge benefit.

Their is a great deal of relief that comes from knowing why we behave in a certain way. As a person myself who has only just been diagnosed in her 50's, It's brought me a tremendous amount of insight and made me realize that I can adopt other strategies as an adult to cope. If you want to afford your daughter that ability, I'd suggest an early diagnosis is key'

I've struggled for many years and life has been much harder than it needed to be and certainly harder than it's been for my children, who've had a good deal of support from early on.

It's likely that she will always find life difficult, however knowing, accepting and acting on that information has the potential to tranform her life. Be mindful also that Exams and education in general has a huge impact on behaviour. One of my boys challenging behaviour has been hugely impacted by the conclusion of his education. He still has meltdowns, but at least the volumn is turned down a little.

Write all that she experiences down in a case statement style document,(I cannot tell you how helpful that is during meetings, as I always walk out realizing I've forgotten something.) give each assessor a copy of that document (For openess and transparancy) and get her fully assessed by independant professionals who have no hidden agenda and will assess your child now!

You are doing great as a parent, so don't loose faith. If the LA want to assess her again in their own time, then all well and good, but most would admit that they would have to consider the findings of their peers in the field, irrestpective of whether they work independantly or not. From that point it often becomes a formality as so much eveidence is gathered.

If I can help you with any specifics please ask.

Regards

Coogybear