Long process to get diagnosis

Little bit of a roller coaster day but finally got confirmed that my daughter is on ASD. I have been pretty anxious but was expecting it to be honest. Lot of things finally make sense but even though have read loads I think it will take time to sink in as a family.

Thankfully have found the forum and lots of other people going through the process and finding out what it means.

thanks xx

Hey there.

Just wondered how you are doing and how the ADOS went. Hopefully you got some answers and have been able to move forward.

My daughter has spent time with worker from CAMHS which helped and had worker attend school to do an anonymous school assessment but was sussed by my daughter. She has an ADOS this Monday and hopefully it will allow us to know either way and for her to get answers.

Strangely I have been keeping a reflective journey of my younger life and memories. It has been enlightening as I realise I have not got many things in life and have either been quiet to mask or tried to find a friend as a sounding board/query source. I know there are strong genetic links.

anyway hope you are all well. Xx

If you have the ados dont nesacarily think anything will come of it. my son is 7 now and since he was a baby we have known something was wrong,the first pead we had was totally useless,hes been under the pead and salt since around two if not younger.

School knows he is on the spectrum,i know hes on the spectrum and yet we still await dignoses.

We had the ados and nothing came from it expect that he spoke in a montone voice, Now put speaking in a montone voice with hypercussis,sensory issues,routine bound,jumping up and down and flapping his hands,lining up his toys every time he plays with them,huge meltdowns all the time especially in suprermarket,no danger awareness what so ever! can be very reptitive in speech, haircuts are absolutely painfull for him as is washing his hair,wont wash hand or face or brush teeth,will not hug your kiss,finds its very hard to show emotion,takes things very literally,cannot read other peoples feeling,lacks empathy in a huge way,has eaten till hes been sick and i have stopped this, lacks socail skills,in a group at school for gross and fine motor skills, has self stimulated since he was around 6 months old,will not usually go to sleep till 1am or later and many other things, when you put all this together it all points to one thing. Why they cannot see all this i do not know,i know i have been fighting a long battle and hope that my son will eventually get a diagnoses.

I hope that you will get where you need to, to get your daughter the help she needs. xxx

Hello again,

Just found this list you may find helpful.

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

Coogy

Hi True self,

  Given your concerns about the lack of experience of the paediatricians, I wouldn't rule out the ASD diagnosis even with the current conclusions.

I'm not sure where you live in the country, but you may want to also consider an assessment by Sarah Hendrix, the lady who's video I sent you. She is well respected in the feild of female ASD and has published several books.

www.asperger-training.com/.../

She makes it clear she does not have the clinical qualifications to diagnose, but 'Hendrickx Associates provides Adult Asperger assessments which follow the same process as a formal diagnosis, including a comprehensive report of the assessment process and outcome.'

Additionaly, her qualifications in Autism and her considerable experience in assessing and working with women on the spectrum is well documented.

You would probably have to provide the writen case statement i mentioned earlier, but to be honest and accurate assessment is more valuable in your daughters support and as you say for your child to know who they are and to be independant and happy, is worth the process.

I wish you luck

Coogybear

Hi Coogybear

Thanks for your reply and I have stopped asking opinions of people ie family and friends. I think I have realised if I don't have the answers then they definitely don't. At the moment her cognition and how she uses it to adapt her behaviour is being investigated and she has already being diagnosed with transient tic disorder 18months ago. The tics are still evident so not transient anymore.

We are gathering all the evidence we can to be able to give all the necessary information at her ADOS. We have seen paediatricians and they have said everything is normal but I don't think any are truly aware of female presentation of aspergers, even though it is not diagnosed as that now. i think girls with high IQs have learnt so many strategies and maybe parents look for help later because they hope their child will just get it and behave. The teen years seem to be a time when things really reveal themselves and also as this is a spectrum they all present so individually.

I will look at the links as have read a lot from Tony Attwood and really like his approach. I think keeping pushing with the process takes drive and some days it can be draining but for your child to know who they are and to be independent and happy is worth the process.

Thanks

Hello True Self,

  I must say I concur with Socks.

Sadly, as he says, your story is not unusual. However, in addition to the difficulties of getting a diagnosis you also have the added factor of potentially having a female on the Spectrum, which can be fraught with difficulty to diagnose owing to a good deal of masking which goes on in the female presentation nof the condition. If you do go for a second opinion  re ASD, I would suggest that you find someone who is tuely 'trained in identifying females on the Spectrum.'

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 two links which maybe of some help. One outlines Tony Attwoods Schema for the female presentation of the condition (6min), the other is a presentation by a female with the condition, surrounding Anxiety for children and young adults in the educational setting (43 min.)

www.youtube.com/watch

www.youtube.com/watch

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

Thanks for your reply.

It is exhausting with the process. I think the reality that so many people are going through this process and having this forum helps to ask questions. I think my anger is more at myself, the how I can have missed things and that the poor kid has had her parents annoyed at her and she has been unable to know why or change a behaviour.

I suppose so many things are hidden by developing coping strategies and many even get to adulthood with only interventions for depression etc. I find the process enlightening but sad that it is such a struggle. 

I hope the ADOS this week goes ok and that your daughter is able to get some answers and any necessary support.

Take care

Hi

It is just such long journeys for all. I work in a special school and I see the process of pre school parents waiting for the diagnosis and these little ones have very definite traits/signs. The traits we have seen in our daughter could be missed as bad behaviour, rudeness but having insight with education has opened to us that there is more and you can then go back through development history and see the signs that we missed as we did not know. I am in awe of how these teenagers have used cognition to develop their coping strategies.

We are not really looking for definite help but more being able to educate guidance at school that there may be times with planning and exams that extra thought might be needed. I have now realised that we may need to support as required for longer than we thought but I am definitely a can do person and would support her to move forward to improve her independence.

Great that you got your diagnosis and must admit have thought about private assessment. 

Thanks

Hi,

It's quite depressing to see this story over and over again. The difficulties encountered by people trying to get diagnosis are shocking! You are not alone and we are with you in your struggles.

My next suggestion is pure pragmatism and goes against the grain of every fibre in my body but here goes. Have you thought of going private to get the diagnosis?

I got my diagnosis back in May and have found it massively useful and empowering. The only warning I would give is that she mustn't use it as an excuse for lazy, bad or destructive behaviours. If it helps her with insight and explanations then I would say that it is a good thing to do. It won't magically make help services spring up to help.