To be convinced this isn't autism

**:33MyDcAreMarvel

I have three diagnosed children and a nearly six year old on the pathway. My dc were diagnosed at 8, 17 and 5.

Can I ask if you had problems getting help for your 17 year old?

My DD was diagnosed at 17 now 21 but we just can't access any help for her. Wherever we try there is no budget to accept her

Go to the assessment. One of my DD is Autistic, despite being around autistic children and working with them and my friend having an autistic GS we missed it with her until she had an appointment with eating disorders. They saw it straight away luckily as she was over 16. They paid for the tests, I would never have been able to afford them myself.

Now because she was diagnosed so late it is impossible to get her any support (Her university were great putting help in place ) but now she has graduated that has all gone so now she is struggling again. There is just no funding available for her.

Don't cancel an appointment that could benefit your child, if they are autistic do it now so that they can access the system in place that my DD can't x

How do you know he " chooses not to care " ?....maybe he has difficulty expressing himself.
I haven't read all the previous replies but my ds was diagnosed at 9 years old.
I wouldn't skip the appointments to be honest. You owe it to him.and yourself to see this through. Yes, it's a long, tiresome road , but if I were you, I'd need to know for sure.
Having a diagnosis has really helped my ds. The one major change was our attitude towards his behaviour and our response to it. I think that's had the biggest impact on him .
He did some communication and life skill courses which have helped immensely too.
The best of luck, but if you skip these appointments you may well be out of the system and have a very long wait to be seen again if you change your mind .

giggly There are other routes in the NHS to get an assessment for Autism. It's not just the CAMHS team that give out the diagnosis. I would not even recommend going through CAHMS as their waiting lists are atrocious.

I think you'd be unreasonable to cancel. I've been fighting for 18mths to get my 10 yr old assessed and am stuck on waiting lists for god knows how long. I have Aspergers, which is part of the ASD spectrum. I dislike change, have traits of OCD, like routine, I understand emotions, can communicate effectively. I have numerous traits that are effectively neurotypical but doesn't mean I'm not autistic. My son is similar to me. Just because it isn't textbook neurotypical or neurodiverse, doesn't mean it is or isn't.

OP my friend did what you did and out of shame or stupidity or both refused to have a formal diagnosis for her abusive child (he used to be verbally abusive and controlling over her and his sister). He is now a miserable adult and unable to function in society despite having fairly mild autism. His cousin also has a similar form of mild autism but did get treatment and access to coping strategies as a child and is holding down a job, has a girlfriend, and is looking to buy her first house soon. They

It’s far more likely that he is incredibly frustrated and sees you as his safe zone. So he acts out his frustrations physically, on you. He knows you love him therefore he can behave atrociously without worry that he will lose you.

You haven’t failed him. Please take him to the assessment and get all the help you can with behaviour management. As hard as this is also please don’t take his behaviour towards you personally. He doesn’t hate you.

Even if he doesn’t have ASD there maybe other factors such as an avoidant personality type which could be identified. Basically grab any help you can with both hands.

I have three diagnosed children and a nearly six year old on the pathway. My dc were diagnosed at 8, 17 and 5.

whyismysoullost how utterly untrue that most children are diagnosed at age 2-3 you obviously don’t work in CAMHS.
Op I wonder what you think the real cause is ?

@hookiwooki I am so sorry to hear this. I am sure you know girls mask a lot, they learn to do things that make them look like they are not on the spectrum. That's why they don't get diagnosed so early sometimes.

I looked at Aspi girls stuff etc, especially from the states, on line. Aspi/Aspergers is not a term used in the UK so much now but the Dr who diagnosed my dd said that that term still applied and books about that would be helpful.

Good luck

How you doing @Confusedmum1511

Thank you @Italiangreyhound. We're in that awful stage of needing a diagnosis because everyone believes she is fine, particularly at school. She is categorically not fine, as demonstrated by the way she collapses emotionally at home.

The SENCo is the first person to take us seriously, but her hands are somewhat tied due to DD masking.

We did manage to get it brought up at a services meeting a couple of years ago but she was passed off as no concerns by her nursery team leader (despite obvious-at-the-time sensory and social difficulties) and it got dropped.

She has adjustments at school and we have regular meetings with the SENCo but I think we're in for a bit of a wait still.

In the meantime we're doing what we can at home. I've attended the suggested parenting courses, trialled the prescribed behaviour management techniques - none of which work with DD as she doesn't respond to positive reinforcement. And obviously I've made adjustments at home with regard to sensory issues and anxiety triggers.

At weekends and in the holidays she's a dream, I think Christmas will be ok this year with some careful planning, but on school days she really struggles and I'm not sure how to help her.

@hookiwooki please do not feel guilty, we all make mistakes. My dd is 15, diagnosed 18 months and I am only just realising the depths of her overloads.

Just saw your update @Confusedmum1511.

It's the right thing. I think we all feel like giving up sometimes, and there are times I feel like I'm crazy or paranoid, or just a really bad parent because DD must hate me to be the way she is with me. I don't want to label her or cause her to be stigmatized. But deep down I know something's not right. I know she thinks very differently and that she will be labelled and stigmatized with or without a diagnosis. At least a diagnosis opens doors for support, for us as parents as well as for her.

Before I realised the depth of her anxiety around certain issues I opposed her, for which I'm wracked with guilt. Now I understand a bit more, I can do my job as a mother properly and stand with her, against the whole world if need be.

I heard something somewhere which has really stuck with me, and maybe it will help you too:

It's not people with autism that are wrong, it's everybody else.

No, definitely not the end of the world.

DS1 is autistic and I recall so clearly when his school recommended he get assessed. I was wandering around Sainsburys in tears and then realised that it made no difference. He was still my gorgeous boy and I would not change him in any way.

The diagnosis has opened doors in that we can access extra help at school. His teachers 'get him' more now. It can be hard, and we have chosen to not share his diagnosis with all and sundry (until he chooses to do so... he does not actually understand it at the moment). So it is hard to face other people's prejudices. For example, when he was about 5 he had a meltdown while we were at church and I took him outside. Someone came out afterwards and sneered 'what is wrong with that child Is he autistic or something?'.

The thing i hate the most is people using the word autistic as a perjorative or think it means the child is not empathetic. Or they blame your parenting- the myth of the refrigerator mnother still prevails in some circles. But my DS an utter joy. He is funny, his outlook on life is really interesting. he is incredibly kind and sensitive. He is getting bullied at the moment and he just asks me 'why is -name of bullying kid- like this to me? is he really sad about his life?'

The things he gets really obsessed about are invariably quite interesting when you get into it at that depth. It's generally been a total joy to parent him. Not without challenges, but he is a terrific little kid.

Based on my own experience, I would stay in the system. DS had some traits as a toddler but, like your child, had many things pointing towards him not having ASD. Tbh I was in denial and didn't want him diagnosed which, in retrospect, was incredibly selfish of me. He was assessed at age 7 after concern raised by school and again (to my relief) was told that he didn't meet the criteria, although I do think I subconsciously withheld information during the assessment as I didn't want a diagnosis. We were discharged from the system and I was convinced he wasn't autistic. He coasted along ok for the remainder of primary but was clearly different to his peers.

Then, he went to high school and it was a complete disaster! He couldn't cope with the change, having to move from class to class, organising himself. He was also bullied by kids who labelled him a weirdo (his primary peers had accepted him for who he was, now he'd been thrown to the lions!). Poor kid nearly had a nervous breakdown. He was eventually re-referred but was at the bottom of the waiting list so it was nearly 2 years before he received a diagnosis of HF ASD age 14 and started receiving the help he deserved.

I can't help thinking that if I hadn't been so resistant he would've been diagnosed much earlier and gone into high school with support in place.

I"ve since learnt a lot more about autism and realise that, in many cases, it is not the end of the world and makes my son the wonderful unique person he is.

Thank God my son is in a much better place now but I regret every day what he went through. Please learn by my mistakes.

If it isn't autism it could be something else that is highlighted. It would be doing a disservice to your son by not pursuing it and it seems like you are readily accepting that it is down to you and your parenting, which isn't the case.

Your ds is still young and his development may improve over time but if he does get a dg of asd then doors will open for you and Him in terms of support. Don't give up even if it is a hard process.

My dd was 8 when she was dg with autism and adhd after being referred at 5. When the dg came it was like a weight lifted off her shoulders as she finally knew why she was the way she was, and that people will be able to understand her better. She has thrived this part year due to the support given to her since her diagnosis.

Most people would not think she is autistic and would probably just label her as a funny/weird character but fully functioning.

In a way diagnosis also protects her as I won't know how she will develop in to adult hood but atm it flags up that she will be a vulnerable adult, she will always have people to support and protect her.

Cancelling the assessment they clearly have assessed already that he needs is crazy!

why on earth would you throw away all the help, support and guidance you can get by going through this now rather than when he starts really failing/struggling/in trouble?

I was like this before my DS's assessment. I'd pushed for months for the appt but suddenly I convinced myself that I was overreacting, maybe I was a bad mother, maybe I had Munchausen-by-proxy, I was just wasting NHS resources & should let the appt go for someone who really needed it... I also had mixed feelings when they confirmed the diagnosis. My head knew it could be helpful for him but my heart wished they'd said I was a bad mother because he could get over that & not have struggles his whole life.

They also said throughout the process that they might reserve judgement & ask to see him again in a few years because nearly 5 is still quite young & sometimes the symptoms can be normal for younger children depending on their developmental age so they might need to wait and see if he grows out of them. Everyone on our post-diagnonsis support course had children with much more severe difficulties. My niece was 8 or 9 when she got her diagnosis & that was considered "average" so I don't think 5 is particularly old!

Despite all that, I'm putting off getting my other DS assessed. He's a very different character so I'm sure autism can't possibly be the reason he has huge meltdowns & hits us because we ask him to do something simple like put his socks on, drink something or stop building Lego so we can go out somewhere that he wants to go. Nope, definitely not autism/PDA - we're just dreadful parents who can't control their child...

Sorry that should read It's not been an easy journey !

My 21 year old son has a diagnosis of autism ( high functioning ) and dyspraxia , as people have said it is a spectrum so there is not a one size fits all list of characteristics . What I will say is that when he was first diagnosed at the age of six , the new world it presented to us felt very scary . But now 15 years down the line it could not be a more different story , he is a bright intelligent well adjusted young man in full time employment . This is not just due to his inner determination to push his boundaries ( which he does every day just to get through the day ) , but to the countless professionals who have helped him and us along the way . The benefit of his diagnosis has allowed us to reasearch and fight for the things he needed to be able to educate and help him better deal with both these challenging conditions , learn invaluable coping strategies to help him navigate a slightly easier path through his life.It's not been an easy journey at all , but I'd do it all over again if I had to.
Remember at the end of the day if a diagnosis is given , it's not us as parents who have to learn to deal with living with an additional need it's our child , and our job as a parent is to help them to the best of our ability . To me knowledge is power , I appreciate that it's a scary concept and it's tough to hear that your child is different , but having it confirmed can give you the power to put things in place now which can make a huge difference to their future.

Please do the assessments.

My child does not seem autistic, he has advanced communication skills and is very sociable. He has no learning difficulties or 'special interests' and not only understands emotions but is overly emotional himself. Imaginative play has always been fantastic! He's currently jumping around in a Harry Potter costume making up spells.

I'm just trying to say your list of exclusions why your child is not autistic does not actually exclude autism. It has such a varied presentation.

I understand it's frightening. My son has been diagnosed for three years and I still feel afraid at how he will develop.

Please just do the assessments. They will not diagnose someone who is not autistic. They might consider other diagnoses after going through all the processes.

If your child is autistic they need to know. I have worked with adults who didn't know they were autistic until adulthood and may have had a mental health crisis along the way.
If they had known they could have accessed support at school/work/home and been proud of themselves, not wondered why they were different and been self critical instead.

DS2 has just been diagnosed at 5yo - he’s very social, overly so and really doesn’t understand boundaries or the difference between friend or stranger. He understands what different emotions are and can understand them in himself but cannot relate them to how others may be feeling. He can be a lot of fun to be around, but his meltdowns are violent. Conversation is very much on his terms and often one sided, he can make eye contact, although there are times he will actively avoid it.

I can kind of see where you were coming from - while we were going through the assessment process I was worrying that he wouldn’t get an asd diagnosis, and we’d be left with “he has behavioural issues and it’s all your fault”. Probably because of how people made me feel prior to his diagnosis. We’d be out in public and getting tuts and stares when he went into meltdown.
I’ve had strangers and family tell me he needs discipline and I’m too soft. Now he has a diagnosis I understand where his behaviour comes from, have told certain family members to get stuffed with their ill informed opinions in his behaviour and the public I ignore since it’s none of their damn business. His diagnosis has helped us as a family, as well as him accessing support at school. We’re happier, and now we understand him better we take things at his pace, and react better to situations he struggles with.

FWIW, I find it odd that people get so bent out of shape with labelling/not labelling their kids (not saying you are op, just experiences I’ve had with others). DS was already labelled as disruptive, naughty, etc. He now has a far more accurate label, and he’s still the same kid he was before diagnosis, just a happier more well adjusted one now we understand him better. Good luck with it all op, I hope you can get the support you need.

You've had so much good advice op, but I just wanted to add that I am a teacher and see nothing in your initial post that rules out autism.

Please don't cancel the assessments. I'm sure you are frustrated that the process is creaking along at a glacial slowness but at least you are in the system. If you cancel now then you will be back to square one. Let the right people assess him and make a diagnosis, or rule it out. It is not something that you can or should do yourself.

With a diagnosis, whether it is autism or not, you will also find it easier to access and receive the help and support that he needs at school.