To want to smack this woman in the mouth?

[QueenOfTheEighthKingdom]

Fantasising about it is about all I can do but she sure will get a mouthful if I ever see her again!

DS (17) was diagnosed with Autism today. Almost 6 years after my community paediatrician insisted he didn't have it.

6 years of hell he's gone through not being able to access the support and therapeutic educational opportunities he could have had, battling through mainstream education and sanctions for behaviour he can't control creating a depressed, massively anxious, totally disengaged teenager who has been misunderstood and blamed for years!

AAARRGGGHHHHH!

my friend's dd is 25 and she has been seeking a diagnosis all this time, just got one.

YANBU

I felt the same when my DD was diagnosed at 15. She was 2 when I first looked for help as something wasn't right. 13 years of being told by numerous different professionals that there was nothing wrong with her and that I just needed to be a better parent. I was so angry with them all when she was finally diagnosed. I had thoughts of hunting them all down and slapping them with a rolled up copy of her diagnosis papers.

@janmeyer
they're busy telling parents crap like "oh he can't be autistic because he makes eye contact/plays with toys/is affectionate/talks normally."

This. With bells on!
Infuriating. Unfortunately far too true.

We've had exactly that, cant access services that require ASD diagnosis.

People won't get it fully. Unless theyve lived it.

Completely understandable. My DS got his diagnosis a couple of months ago (he is 14) and it has made a surprising amount of changes in our lives, even though he is HFA and in mainstream education.
Is there a complaints procedure you could try?

That's it in a nutshell Bessel.

When I queried why he didn't meet the 'criteria' at his original diagnosis of learning difficulties, she suggested that I think about why I wanted an autism diagnosis! She also suggested that I put him in voluntary care due to his behavioural issues, which were exacerbated due to his frustration at being misunderstood.

I had to ask her to agree to a 2nd opinion which took her almost a year to agree to as she didn't feel it was warranted despite her being aware of ongoing issues which were not improving. He didn't meet the original criteria due to his social interaction and eye contact, ignoring the rest of his classic symptoms and that he was diagnosed with severe communication difficulties.

A GP at my surgery told me that I should go over her head as the general consensus among his colleagues was that she was obstructive and wouldn't accept being challenged. I'm furious.

We were at the Evelina at St Thomas's today. DS is an absolute mess. I can only hope I can find the right educational provision with his diagnosis now so he can have a few years of a therapeutic environment which might make a difference .

sending hugs OP. your poor boy. i hope he gets to feel happier in his own skin now

This is MN, so to fantasise about being violent to anyone is completely wrong and you are being unreasonable. Because, you know you should just take a few deep breaths and accept that you at in the wrong for not fighting enough for a second opinion like any reasonable parent.

I'm just marking my place for the comedy.

All those insisting on 2nd opinions don't get what a 2nd opinion means.

I found it is just another person looking over notes and agreeing with the previous person.
(7years with a zimmerframe after more than one consultant diagnosed me needing a new hip as opposed to going private and getting a diagnosis of a slipped disc.)

Ds has waited 10 years and has finally had a test to confirm dyslexia and dysgraphia and it also came up that we should look into an ADHD test which CAHMS said he didn't have after seeing him just as the lift doors opened when we went to look into whether he had ADHD.a few years ago.

I know where you are coming from OP and YANBU. Obviously you’re not actually going to go smack anyone. It’s not unreasonable to imagine it though, or to feel strong anger at someone (working within a dysfunctional system) who has blocked your child’s access to help they do desperately needed.

Anger is an energy, etc.

I'm really glad you finally have a diagnosis.

My DS saw 8 different psychologists, before I actually asked for a diagnosis (and received it)

I did want to punch the psychologist who said "you'll never get a diagnosis" when I was telling her I thought he had sensory processing disorder. Her colleague told me if I could walk through town with him then he must b OK. He's now 20 and although academic can't cope with nag

negotiating busy city centres.

I still remember her smug smiling face saying "He'll never get a diagnosis"

Actually, he eventually did.

@Oliversmumsarmy - it sounds like our DSs have all the same things going on! Some to you too and all round

I agree with @Soontobe60 I also have an adult son with autism. His diagnosis at 6yrs old certainly didn't stop school disciplining him or applying sanctions. Even with a diagnosis back then you would have had a fight on your hands for anything. I don't think a diagnoses would have changed that. We never saw a paediatrician or occupational therapist again after the diagnosis. We haven't had therapy, apart from some putty stuff that school thought might help. He does take anxiety meds but only since the age of 19. There was never anything other than mainstream education on the cards for him.

I have a younger son who was diagnosed with ASD ages 5/6 and with a high ADOS score. His learning difficulties are much more severe than my eldests and there is a slight chance of a specialist educational setting for him, if his EHCP is agreed. We were asked to apply by the LA and they have agreed to assess. He's 10 now and his needs are pretty obvious and there have been no hold ups. Just trying to illustrate that even with a diagnosis, the hurdles still exists.

It's a shit place to be in. It's even more shit to see something is wrong, to know something is wrong, to see your child suffer and struggle and professionals just shrugging their shoulders and blame parenting,environment anything and everything. Or like in the case of my friend "inconclusive ,come back in two years". Or even worse a long list of difficulties with "we're discharging x " at the end.

So you spend years asking for help,thinking maybe you're crazy and paranoid,maybe you're a shit parent, and trying to help your child without the help of a diagnosis, ECHP etc. And then years later you're finally told you were right all along and your child suffered for years or tried to cope with no help...for nothing.

And you wouldn't be angry? You wouldn't want to punch someone?

We had same issue with family member, from ages 9- 16 he was constantly in trouble and getting tested. Was not diagnosed until he was 17 and damage had been done. By this point he was self harming. Drs did not want to diagnose him just because he could hold a conversation for an hour or so with them.

I was told by the comm pead that dd was not autistic, it was just sibling rivalry. This was about 4 years ago. Of course, they looked at my parenting 🙄 but she is autistic and was diagnosed about 2 years later.

Autism diagnosis is multi-disciplinary, so theoretically a dr should not say a child has/hasn’t got it.

So sorry to hear this and I understand your pure frustration that they life of you, your dc and your family have been changed by this.

Totally reasonable to want to. I'd want to do WAY worse to anyone that stood in the way of my son getting support he might need.

Sounds tough. Hopefully he can now access support.

You can think whatever you want and it is not unreasonable. The frustration you feel must be incredible. Now, you can move forward and do what you can to help your child and your family.

We went through a lot to get our dd diagnosed at the age of 7. I can't imagine what life was like for your for your DS and the whole family.

Take a moment and feel your anger, but then find a way to forgive and move forward to get the results you need.

It’s an awful situation to be in. It can take years to get a diagnosis or even to be allowed to take the very outdated diagnostic tests for ASD.

When we were told my DD didnt have ASD, we kept pestering everyone and insisting they told us what she did have then, as she clearly wasn’t ‘normal’.
Eventually they told us she had an atypical presentation of ASD. Turns out girls do present very differently to boys. Yet the tests are geared towards boys’ ASD presentation! Thus many girls are being failed. Luckily, DDs school were brilliant, gave her lots of help and persistently contacted CAMHS and Access to Learning on our behalf until things were sorted.

Sorry for minor derailment, OP, I know you have a DS, not DD, but it’s typical of how useless they are. Getting a diagnosis helped open doors for my DD, so I can well understand your anger that your DS has been denied the help and understanding that he should have received and to which he was entitled.

I hear you Op. I'm so sorry that you and your DS have had such an awful time of it. I hope that your son starts to feel better after today's events.

My Ds got his diagnosis in January, a month before his 11th birthday. I have been trying for years and years to get him assessed and it was only after intervention from the Leader of his Educational Support Unit ( he has not been in mainstream since I took him out of school) that we finally got funding for an assessment at Great Ormond Street. For too many years I've had to hear that he's not autistic, I just don't put enough boundaries in. He's not autistic as he makes eye contact. He's not autistic as he has empathy. He's not autistic but we'll give you a parenting assessment and send you on some parenting courses instead.
All the people who had a hand in blocking my son's route to assessment and treatment, all of the Family Workers who gave me their opinions, all the teachers who told me my son was just naughty and a bully, instead of seeing a frightened and overwhelmed boy and so on....well I'd like to set Joffrey from Game of Thrones on them.
I would like to add that GOSH were absolutely bloody terrific, from referral to diagnosis was a matter of just 4 months. I wish all our children could receive the same service, Lord knows they deserve it.
I wish you and your DS a happier future, Op.

if I felt my child had asd and was being fobbed off yes I would have asked for another opinion

Do tell us what you would have done when refused, @BigRedBus.

Add me to the list of your supporters OP.
to see something is wrong, to know something is wrong, to see your child suffer and struggle and professionals just shrugging their shoulders
That describes my experience too from friends, family, school and professionals. It's sickening. And it takes so long to undo the damage their attitudes have caused. Guess who is left to sort that out - clue - it's not the people who have caused it.

My ds was 17 and at college doing a trade before anyone deigned to test him for dyslexia.
He also has dysgraphia as his handwriting is illegible

All these things have been pushed along the line rather than testing him at 5/6 or 7 when it would have done some good.

Ds does his English GCSE retake next week.

Unfortunately too little too late

if I felt my child had asd and was being fobbed off yes I would have asked for another opinion

It's a fucked up system where a child's wellbeing,education and the mere ability to function is left entirely to parents. Parents who sometimes don't have the knowledge,skills,resilience,confidence to fight or suffer with their own MH system.

It shouldn't fucking be a fight. It shouldn't be an obstacle course with ever changing goalposts ,some not even fit for purpose (like diagnosing ASD in girls) . It shouldn't be a fucking postcode lottery. It shouldn't be an average,normal person against professionals that supposedly are the experts in this.

Your feelings count for fuck all in a first,second or fifth opinion. That's ofc if you even manage to get to that point.

I think it's very hard to understand just how difficult it is to get a diagnosis for high functioning autism is unless you have actually been the parent trying.