to not want to follow up on a diagnosis??

[HackAttack]

I'm starting to feel a bit worn down on this issue. There is a history of autism in my family, however an actual diagnosis had a terrible impact educationally on a close family member.

I have two children and I'm not blind to the fact my oldest is very different to the youngest and to a lot of other children. My oldest is nearly three.

He has HUGE phobia issues with food and is intensely particular about routines, how things should be and the 'ceremony' surrounding how things should happen. He needs patterns and for things to make sense and is generally pretty intense. The sensory thing extends to messy play being an utter no and other similar stuff.

Not following any of these can lead to meltdowns that go on for hours. I've lived with autism up close, I've had training in the area. I recognise there are traits here but I don't see the benefit of having it made official by some invasive process.

What do we get from it? He is just my son to me! I refuse to be someone who explains him by 'oh he's autistic' or defines him that way. I know how to support him already and we've overcome social anxiety already and his self esteem seems to grow every day. His speech is incredible, at his last milestone check he completed the activities up to pre school level, this isn't holding him back.

I've had a the talk about the referral process from the HV, family members, Sure Start worker and even random colleagues. It's exhausting, I don't want him labelled, he's not a bloody condition to me, he's my funny, adorable, fabulous little boy :(.

[unlucky83]

Alice it is a local thing - run by my council area organised by our child psychiatric services -they do something for younger children too (which I obviously missed). They are trying to introduce it nationwide (in Scotland for now ). Not sure if anyone else is doing it.
It is supposed to be money saving in the long run. The idea is that it being specific reduces the need for other types of general parenting courses which have limited success, reduces behaviour problems in schools and the community, reduces the need for other interventions.
(I felt like a fraud - we had to introduce ourselves ...I was saying I wanted her to do her homework and keep going to school and everyone else (boys though) were saying they wanted them not to be excluded again and the police to stop coming round )
They are also trying to raise awareness of ADHD in girls in schools with a view to increasing diagnosis - apparently still common for them to be undiagnosed. Be seen as daydreamers but otherwise almost model students until 13, 14, 15 then completely go off the rails, school refusing, drink, drugs, teen pregnancies etc - which is what I did (without the pregnancy luckily and thankfully).
But I think if you do have a diagnosis that is less likely to happen...
As to the course -it was 5 weeks but a summary...
I had already worked out it was best not to give her a direct order - so eg 'Get up now' would be met with resistance - 'you need to be getting up' worked. (For everything...it is tiring!!!) If I got cross and she thought I was unfair - or ordering her about - she would fight back and it would escalate.
I think the biggest take home message I got from it was to make sure they know they are doing it for themselves and you are doing what you do, have rules - for them -it is all about them. (And they don't see long term consequences).
So tell them why you are making them do xyz - tell them how it makes you feel if they don't. Why it is important.
So they don't tell you when they'll be home/come home late - instead of exploding about how stupid they were - tell them when you don't tell me I really worry about you. If you had had an accident or been abducted I wouldn't know you needed help. Start things like that with how you feel - it makes me feel/I felt worried when...It makes me feel sad when...,etc.
Let them know you understand that it is really hard for them. All teens find these years difficult but it is especially difficult for one with ADHD. It is normal teen behaviour amplified...
And really choose your battles - concentrate on the important stuff.
Forget what they SHOULD be doing and concentrate on what they NEED to do. So the school email me her important homework (coursework for exams) and I make sure she gets it done. Ideally she would do all the homework but ...
Same with tidying rooms etc. There are more important battles.
They had a traffic light system -
Red - immediate action has to be taken - they are a danger to themselves or others.
Green - just let it go...and give up any resentment - so they are going to forget to do XYZ - accept that, don't get upset by it.
Amber - would you would like to happen.
So you can actually write contracts, you can discuss what needs to change, listen to what they say (even if it is nonsense) and agree the consequences. And it is written and agreed - no argument about it. So DD stays up late, struggles to get up and kept missing the bus - if she misses the bus she loses her phone for that day. We have agreed that is fair.
I think that was about it....sorry huge post and a bit of a derail...sorry.

[elliejjtiny]

I have experience of diagnosis and no diagnosis and life with a diagnosis is so much better.

I was diagnosed with dyspraxia at 20 and before that I struggled a lot. When I finally got help (at university) I did very well.

DS1, aged 9, got a diagnosis of aspergers syndrome last year. It has made a huge difference to him with his self esteem and support in school.

Without a diagnosis children are still labelled. But they are labelled with things like "weird" or "stupid" instead of "autism" or "dyslexia". With a diagnosis comes understanding. When I was at school I made up a diagnosis because I saw the children with a SEN diagnosis getting the help and understanding I needed. I was desperate to be at least thought of by my peers as having SN rather than being thought of as weird or stupid.

[minifingerz]

Ds2 has a diagnosis of HFA. Like the OP I have always known that he was on the spectrum.

A couple of things:

• the assessment wasn't traumatic or invasive. DS actually enjoyed it.
  
• the diagnosis has helped his school meet his emotional needs better

[trinity0097]

Higher up through his educational life if there is no official statement/diagnosis it would be hard to grant access arrangements in external exams,me.g. Rest breaks, without a diagnosis. Letters from a GP are not acceptable any more as evidence and we have to be able to prove the candidate has a disability to grant certain things that may help, e.g. Being in a smaller venue to the main exam hall etc etc

[AliceInUnderpants]

unlucky83 thank you so much for posting about your daughter. My ADHD daughter is turning 11 and secondary school and looming exams is constantly on my mind. It's helpful to hear of how well she is doing.
Can you remember what type of organisation ran the course on parenting and ADHD teen?

[unlucky83]

Sorry OP haven't RTFT but have read your posts. My teen DD was diagnosed as having ADHD at just 14. I have suspected for many years but didn't want her labelled.
Apparently girls learn to conform at an early age, so they don't generally have severe behaviour problems at school. And she does/has controlled her behaviour to school - she's never been in trouble for anything but daydreaming. But she has struggled with friendships and been bullied. She has been really hard work at home but then I have developed ways of dealing with her so it has got easier
(interesting enough after diagnosis I went on a 'parenting an ADHD teen course' - and I found a lot of the approaches suggested I already used but we'd had lots of hearthache and tears getting to those strategies ...it would have been easier not to work things out as we went along)
It was when she started to really struggle coming up to her exam years and I thought I was going to 'lose' her and she was going to start school refusing that I decided to go for a diagnosis and it was incredibly quick - because I had years of school reports etc backing it up.
On diagnosis she said it is not an excuse it is an explanation.
She has good reason for being 'useless' at certain things - she isn't stupid, she isn't lazy - her brain works in a different way to most other peoples. And school for someone with ADHD is hell - she just has to do as well as she can for as long as she can bear it ...she can always go back to education in later life (I did) - just the further she gets now the easier it is. There are a lot of successful people with ADHD ...it can be an advantage - just not really in a school setting...
She is on medication to help her concentrate and is now on track to do well in her exams. And she knows she has to try harder than other people to do as well (I liken it to getting up a mountain - she is watching others run , she can make it but she has her legs tied together so it is much harder but she can do it).
She is no longer really hard on herself. It has increased her self esteem
I wish I had done it years ago.
I completely understand - because I am certain I have it too....
I did drop out of school, went completely off the rails, relationship with family completely broke down, did some stupid things and ended up suicidally depressed....I am hoping the fact that she has a diagnosis will spare her a lot of that pain....
So IME get them diagnosed - get them as much help as you can, as soon as you can. It is for them - for their feelings of self worth.
They are different - but that's not necessarily a bad thing...their difference can be an advantage. But it has to be acknowledged - by them as well as others...

[NotCitrus]

Another voice saying that if you are unfortunate enough to have to deal with a shit school, it's better to be doing it with a diagnosis than without.
Dn was diagnosed with ASD in Reception, to no-one's surprise except his school, and have been fighting them ever since - now Y3. Getting the LEA on side with the diagnosis really helped. Ds is still awaiting an assessment in Y2 despite being referred before Reception, and fighting to stay on waiting lists - luckily his school support kids well whether or not they have diagnoses and have advised us on how to support dn, but if a school isn't immediately supportive and helpful, an official diagnosis really helps.

[corythatwas]

I don't think it's a given that a diagnosis will lead to self-loathing and/or bullying.

Teen dc have had several friends on the autistic spectrum: knowing about the diagnosis does not seem to be a problem for their generation. In fact in at least one case I can think of it makes it far easier to include a friend and e.g. ignore things they say which might be considered hurtful or friendship-breaking if said by someone else.

[Silvercatowner]

Children who are on the spectrum often sail through Primary, where pastoral issues are easier to accommodate for one teacher with a class of 30, but find secondary really hard. The typical secondary set up means that it is harder for teachers to get to know children, and hormonal teenagers can be rather intolerant of peers who find communication harder. If a diagnosis is in place prior to the transition to secondary then this can make explicit the extra support that the child needs.

[cubesofjelly]

Hi Hack, no judgement here and just responding to experiences of diagnosis.

It's relatively early days, DC1 is 3yo and recently diagnosed officially but had been informally diagnosed about 6mo ago, and lots of warming us up prior to that too. Initially I thought it was all a bit silly and didn't see what they saw, but now I'm glad for it and understand it all much more.

Firstly I think local provision / local offer makes a big difference. Our local area is good for SEN provision and ASD support so our experience has been very positive. I would recommend finding out what your local provision is like, eg through a local parent partnership, online boards, local offer on the council website, etc.

The diagnosis has given us access to facilities like sensory play which is welcome, but those are more of a bonus than the day to day essentials. The big things for us at the moment have been support for DLA, CA, Short Breaks (in process), EHCP (in process but one of the biggest, detailing what DC1 needs), and Portage. The Portage worker has been brilliant and introducing new things - we thought we knew all about DC1 but nonetheless she has been able to bring new activities, approaches and recommendations which has been great and they have a very good relationship. The Portage worker is also helping to find a suitable nursery place and helping with school applications later this year, as she knows what the provision is like in the different schools, and has the connections to chase it up, and has helped us to arrange visits and taster sessions. DC1 also gets a 'passport' through Portage which is shared with all local bodies, detailing what he needs, likes, what is important to him etc, so that anywhere he goes they should understand him, eg that he has sensory issues, not toilet trained, etc, as well just knowing about him, like the fact he loves vehicles and water play.

As I said it's still early days but all of this support has meant that I feel very encouraged for his educational prospects. We also have the option to name schools on our EHCP so essentially we are getting the pick of some great schools - but our area is very good, in some places you really have to fight for the EHCP to happen let alone what goes in it.

[PipnJo]

I just wanted to add as others' have said, diagnosis is a positive thing. My ds, now 8, was diagnosed with ASD age 4. He has had great support throughout school, He doesn't need an EHCP (statement) i know someone mentioned it up thread, but not all children with ASD need one. He goes out for small group support and for social skills help, otherwise is in class full time as any other child.

IT's hard to get your head around it, but good luck :)

[Hoppinggreen]

A family member refused to get a diagnosis for her daughter, unlike you though it was because she refused to believe there was an issue so slightly different I know.
It caused huge problems later when she couldn't access the helps she needed and worse she was "groomed" and the police initially said they would pursue a prosecution as she was clearly incapable of giving consent but the CPS rejected it as there was no official record of any issue.
No diagnosis made this persons life much more difficult than it needed to be.

[MabelBee]

I think two things. 1. Diagnosis is a positive thing! It was the turning point for us and the start of a beautiful upward trajectory. Our diagnosis has opened doors for us. 2. You don't lose control of your child or your choices when you get a diagnosis. You can still choose your school. You can choose whether to engage with services or therapies. Nobody can force you to do anything you don't want to. Nobody takes over.

[HackAttack]

Thank you all x

[yearofthehorse]

HackAttack going slightly against the grain here but I have a DS who has gone through CAMHS with some behavioural issues. We were told that he was almost certainly on the spectrum but we shouldn't go for a diagnosis or mention it to him as it would prove counter productive. He's calmed down a lot now (although will always be a little eccentric) and will hopefully be off to University next year. In his case, I honestly think that a diagnosis would have caused a certain amount of self loathing which he can do without. If things get difficult for him it is always an option though.

[AdriftOnMemoryBliss]

i've been fighting his eating, or rather, lack of, for years. He eats a list of about 10-15 foods, depending on the day of the week (or so it feels, lol) and only drinks water.

Even if this guy can't help, i will at least know we've tried!

[Badoodle]

HackAttack,

I echo what others have said about early diagnosis and intervention being so key for children on the autism spectrum.

I know the assessment process and timeframes differ a lot from area to area, but my DS was diagnosed 6 years ago (in reception year) and received his Statement shortly afterwards. It took over a year to get a diagnosis for us. And that was with me pushing very hard for it to happen. it is definitely worth exploring now.

We only really saw the challenges our DS was facing once he started nursery. He was asked to leave a private nursery after two terms. School nursery struggled badly with him, although they were very supportive. His reception year in mainstream reception was an utter disaster. He was (is) highly intelligent, funny, imaginative, charming - but his sensory issues were off the scale once he was presented with a class of 30 children and a timetable and all the social expectations that come with school. he just couldn't cope without the specialist support a diagnosis and Statement bring.

It is stressful and disconcerting at times to know what to do for the best, and your DS is still very young, but I would honestly advise you to start looking into assessment sooner rather than later.

[hazeyjane]

Sorry, spent so long posting, crossed with lots of good people!!

Hack, if you get a referral wrt diet, ask to see a specialist dietician who deals with things like anxiety and autistic tendencies around food, otherwise you will see a dietician who will give you standard healthy eating advice. Your ds may also benefit from seeing an OT who can advise about food issues (especially if there are sensory issues involved)

[ToInfinity]

OP I'm so sorry that you are going through this.
I was you a year ago. My DS is now 4 and has just been diagnosed with ASD. Like you, I could see that he was not as social as his peers, but I just assumed that would come in time, the gap between them was not that wide. When people started mentioning autism I was totally blindsided and desperately didn't want that for my son. Like your DS he seems perfectly fine and very happy at home, but is different when he is at preschool.
But you know what? He is autistic. His diagnosis does not change that either way. It just gives us all an explanation and a way to maybe access any help he will need when starting school. It also allows school a bit of insight into what they are dealing with.
It is the most awful and heartbreaking process, and I can totally understand you not wanting a diagnosis for you son, but if it could potentially help him in the future then surely is worth exploring? And if he is diagnosed it is totally your choice who you share that information with.
Sending you lots of supportive vibes!

[Kleinzeit]

X-post - all the best HackAttack

[fanjoforthemammaries7850]

I think it would be really sensible to rethink it. I know it's hard.

IMO if you don't accept a diagnosis for fear of him being labelled you run risk of hum being labelled naughty etc.

Good luck.

[Italiangreyhound]

HackAttack that sounds very positive. Try and relax, we are here for you. Having a mum who cares a lot and is clued up will be a great asset for your little lad.

XXX

[hazeyjane]

Your relative had a shit experience because of a shit school, not because of his diagnosis.

^^ this.

At my ds's school there is a child whose parents flat out refuse any sort of assessment - their child is struggling so much, and the school are struggling to access any sort of input or support because of the parents refusal. It is so hard to watch, especially as there is an amazing complex needs resource base (which my son attends) in the school, but he is unable to access it at all.

I am a 1-1 in mainstream preschool, working with 2 disabled children - who receive 15 hours 1-1 funding. I do speech therapy, OT, help with social skills (under the direction of outside professionals) - having access to something like this could be really helpful to your ds.

My own ds is disabled, he has no diagnosis - it is thought he has a genetic condition, has low muscle tone, has very little speech (uses signing are an electronic talker), has lots of sensory issues, social communication difficulties.....a constellation of issues! But he is funny and loving and has an above average (non verbal) IQ and is, well, awesome. Not having a diagnosis has made it more difficult for us to access support for him, but he may never get one, so we just continue to battle for every scrap of support we can

None of us can say what you should do, and it is scary, feeling as though a decision you make now could be detrimental to your child. To us a diagnosis would be like getting a torch to help us navigate the way round all the stuff ds comes up against.

Good luck whatever you do.

[3luckystars]

I know where you are coming from.

But if you find out at age 10 or 12 that he does have it, he will have spent his life struggling in school getting called "bold" when he could have benifitted hugely from the help available to children with Aspergers/autism/ anything else.

It's for him that you are getting the diagnosis. Nobody needs to know if he does have it, he won't have the label on his clothes. I wish you all the very best. I know how hard it is, it's really mixed emotions and can be a lonely place when you are wondering whether to persue a diagnosis. Good luck x