A story so familiar to so many families fighting the diagnosis fight, trying to prove themselves as good parents to professionals who insist on parenting courses, repeatedly finding yourself listing all the negatives about your child/family, repeating yourself to professional after professional, completing numerous forms and going to appointment after appointment, seeking referrals only to be turned down.
Our story started seven years ago when the first person, other than me, noticed that my son was requiring more input/care/support than a child would be expected to at the same age. That person was the SENCO at his primary school, who supported a referral to the GP and referral to the local paediatricians. One may be forgiven for believing that our story is short and ended there, but, as I am sure you can guess, that sadly was not the case.
Our appointment with the paediatrcian was running late, so my son was unhappy in the waiting room. I read him the famous parenting riot act which subdued him just in time for the Dr to call us through for the appointment.
We entered the new room, in a building we had never been to before, met the Dr, who we had never seen before, and whilst he checked our personal details were all accurate, my son sat on the chair as he had been told to. The Dr- a paediatrician remember- then said that he could not possibly have ADHD because if he did then he would not be able to sit in the chair still like that, checked his weight and height, and discharged us.
We then had a number of life changing personal situations which took precedence for a number of years over any further investigations from unhelpful medical professionals. I completed several different parenting courses- each one prompted by my approaching someone for help for me and my son. These ranged from patronising to useless. Not one of them was helpful in any way, shape or form. One lady, who was delivering the course 1:1 with me after I refused to attend another course, actually gave up after meeting my son and I together, saying that she could see I was doing all the right things and the course would not be helpful! Sadly that was not the last parenting course I have been on though.
I am in no doubt that these parenting courses are extremely useful and enlightening for some parents, indeed they were for some parents who were on the courses with me. Those parents did not have children with the same needs as mine. Their children were and are in mainstream school with no additional support. Their children do not have medical needs or care needs beyond those expected for a child the same age.
I have stopped myself from hiding the eye-rolls when people suggest parenting courses, sticker charts, rewards, positive reinforcement, or sleep hygiene. I no longer nod politely and agree with these professionals who clearly have no idea what I, and my family, are dealing with every day and night. I have stopped waiting patiently for people to call me back and begun emailing heads of departments instead. There is no option if you want your children to be seen and taken seriously. Even then you still get fobbed off...but I digress.
It took from the age of four, to the age of eleven for my son to be finally assessed properly. That assessment only came about after we paid for a private assessment. Our reason for paying was not because we think private is better than NHS, or because we can afford it, it was because he had two huge meltdowns in a short space of time, both of which required police involvement, one caused serious physical injury to a member of our family, and social services would not help us. Our GP referred us to CAMHS (child and adolescent mental health services) who seem to do everything possible to not see anyone. They refused the referral three times until I wrote to them and followed that up with a phonecall basically demanding an appointment. The initial appointment was a few weeks later and they agreed that an ASD (autism spectrum disorder) assessment was needed, but the waiting list was around two years. Two years? He had just broken a bone in a family member's body and had a final warning from the police when I had marched him in there. No way could we wait two years. No matter how much I expressed my concerns for his mental health and future, there was no movement or support offered. To the contrary, me seeking support made things so much harder and opened the doors for busy bodies to stick their noses into our business, stir the pot, then leave us in a worse state than we had been before. That is why we went private.
We researched A LOT before deciding where to go for assessment. We didn't want to pay over the odds, wait a long time, see anyone who wasn't properly qualified or registered and inexperienced, and we had a fairly good inkling that he might have autism with PDA (pathological demand avoidance). We read a lot of books, blogs, websites and joined as many social media support groups as we could before deciding who to go and see. Our research led us to a particular psychologist with many years experience assessing and working with people with autism and PDA. Other people had been to see the team and some had come away without a diagnosis, some with, which led us to the conclusion that they were not just handing out diagnoses in return for money (a view many of these professionals seem to have but which can easily be discredited with a little research and diagnostic report).
Our eldest daughter has been through more than anyone her age should have to, and has far more support and care needs than a child her age would 'normally' have. Despite this, and the many professionals who have been involved with her, not once has she been assessed, or any real help been offered. Each and every person who has become involved with her over the years has done the bear minimum and then left. My referral to CAMHS was extremely thorough and we were fortunate to be accepted on to their waiting list around the same time as a new directive was published, stating all new CAMHS patients had to be seen within 18 weeks. She has been very lucky to have been referred, assessed and diagnosed all within a year. We now know exactly what she, and us, are dealing with and the best ways to support her. The assessment process was extremely stressful for her and caused her huge anxiety and stress, but her reaction to the diagnosis was amazing and inspiring.
Our youngest child presents spookily similarly to our eldest, but with even more pronounced needs and difficulties. We were as confident as we could be without having the correct degree, that she had autism and PDA. I approached our health visitor with my concerns and was spoken to as if I was three. She was patronising beyond belief, and no help whatsoever. My concerns over my daughter's sound sensitivity and sensory needs were brushed off, her demand avoidance surrounding sleep and eating were passed back to me with the suggestion of reward charts (yawn! eye roll!) and then she had the audacity to meet with our GP, without us knowing, and they discussed it together and decided there was no need to do anything for our daughter beyond (another) hearing test. I took her for the hearing test and told the lady there that we were wasting her time- which she then confirmed to have been the case as her results - again- showed no physical hearing problems. We decided to bypass the useless medical staff here and went straight for a parental referral to CAMHS and private assessment for autism and PDA with the same people we had decided to use for our son.
CAMHS actually saw her before the private appointment, and agreed that an ASD assessment was needed as she showed so many signs, but I told them I had a private assessment booked already and didn;t want to waste their time, or take someone else's spot on the waiting list, so ended it there for now.
In our area, as in many areas in the UK, PDA is not recognised by CAMHS or social care. This is not because it doesn't exist, merely because the DSM-V (a diagnostic manual issued in america for professionals and insurance companies to know what will be paid for by insurance and what will not) has changed the wording for autism. PDA is not there and the manual no longer separates autism into different diagnoses, preferring to refer to it as an spectrum disorder. This is also why our eldest daughter has a diagnosis of high functioning autism, not Aspergers, as this was also taken out of the DSM-V and bundled into the umbrella of autism (I have heard parents of children with a diagnosis of Asperger's syndrome commenting that this must mean there is now no diagnosis for their child and they must magically need no extra care or support now then).
There is more information on this here: http://www.autism.org.uk/DSM-5
Our three children have been diagnosed with autis m, with different profiles, within the last six months.
Two privately, and one by our local CAMHS ASD assessment team.
They have been diagnosed with autism with a pathological demand avoidant profile (two of them) and high functioning autism with other needs too.
I was going to list the people we have seen this year but will post that as a separate shorter post I think.
(side note- if, like me at first, you find these abbreviations and jargon confusing there is a brilliant site I found here: https://www.ipsea.org.uk/what-you-need-to-know/jargon-buster and another here: https://www.thinklocalactpersonal.org.uk/widgets/jargon-widget/)
Also- I read many blog posts and wonder how on earth these parents manage to find time to write blogs whilst their children are there with them, knowing how demanding this can be. Well, I have already had to save a draft of this twice, go and sort out a minecraft emergency, redirect three children several times to finding dummies, ipads, DVDs, TV remotes and given repeated clear instructions on how to complete everyday tasks that they would be able to do if I were not trying to do this.
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