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 :(.

[kawolski]

How awful that your family member was treated that way.

Our DS is 4 and we are currently at the stage of awaiting our referral for possible asd.
I had exactly the same feelings as you, I think I was in shock tbh.
The reason we have followed through though is that as other people have said, we can manage our son, he is our new "normal" as his senco put it. I am however terrified of September when he starts primary school. I need to know that he will get the extra support he needs when I'm not there to give it.

[Italiangreyhound]

Anutteridiot re "Research shows that the younger ASD children receive support and intervention, the better they do." Can you site any research to this, this may put the OP's mind at rest that exploring this now is the best course of action.

HackAttack if his behaviour changes and these things do change, and you have begun to explore them, you will not have wasted your time, you will have been exploring an aspect of his behaviour as it is now, and you will have gotten answers.

The school not wanting to 'label' dd as dyslexic was very unhelpful and led to quite a bit of distress as we wondered why it was all so hard for her (well, we knew, but got no help until we approached a specific dyslexia charity).

[ChopOrNot]

I am a school Governor - with responsibility for SEND. I have very recently (January) been on an SEND training courses aimed at Governors - for us to know how to make sure the school is not just fulfilling it's duties by it's policies - but also in practice.

The very strong emphasis has changed over the last few years to any SEN provision being joint with parents. It is not just the school saying "we can do xyz so that is what will happen." The school has to ask the parents, to work in partnership with parents, to not dictate or ignore.

This change in emphasis is very new - but will, I hope be embedded enough for your DS.

You will not have the same fight as your relatives did. Firstly things have changed - for the better (I hope) and secondly you are forewarned.

Get the diagnosis. To help you get what he needs if he needs it.

[Girlwhowearsglasses]

OP

One reason to get a DX would be because it can take years To get a proper assessment. If you're like me - who spent many years amending our lives to fit a child who was slowly becoming more unusual in comparison to his peers until I finally asked for help; you'll find it frustrating if and when you do start the process that it takes a lot of time. If professionals have raised concerns too this might take less time, but still, the services that diagnose and help are under-resourced.

You may be better starting by asking for a referral and then opting out at any point you want - so that he's in the system should you want to go further.

Re: the other posters saying 'it's not about you': i know what they mean but can I put it another way: when my DS was much younger he felt much more a part of me and a younger child is much more of a unit with immediate family. They don't spend so much time out of the family and their world view corresponds more to yours. As they move up primary school you slowly start to realise they are their own person- their experiences are now different to yours and they gain independence. The realisation for a parent that it's ultimately the child's responsibility to do their reading, or behave in certain ways, or choose their friends grows slowly- in a few years it will be clear that your son needs/has his own world view and a narrative of his place within it. Having a diagnosis and understanding yourself is crucial to that. It's a big surprise how quickly a child is old enough to take that on in age-appropriate ways. I 'think' that's the point others are trying to say.

[Waitingforsherlock]

Another one here pro-diagnosis and as early as possible. My dd was dx at 12 by which time it was too late for her school placement which had fallen apart for a second time. She is now home educated and we are trying slowly to put the pieces of her confidence back together. She coped for many years by masking and then falling apart when she felt safe to do so. If only I had known then where the roots of her difficulties lay I would have been able to help her more.

Also, her dx of Aspergers has come as such a blow to her as she goes into her teen years; it has been a source of intense anger and sorrow. Perhaps if she had known sooner she may have been able to come to terms with it. This eventuality is, at present, a long way off.

[Verbena37]

Hi,
We have very recently had our 11 yr old DS diagnosed with high functioning autism and I have to say, the relief is tangible. Since knowing, I can help support him and the rest of our close family understand using evidence and best practice techniques.

He was exactly like your DS but I had done lots of reading and self diagnosed selective eating disorder.....without realising that all of his other traits all combined to autism. This made getting help for him very difficult, especially because selective speaking disorder is not very widely accepted as a diagnosis on its own.

I understand your brother's diagnosis had a negative effect on your family but it doesn't have to be that way. You don't have to tell his friends unles she wants to as he gets older. We have only told his school because of him masking very high anxiety at school, then having full on self harming melt downs at home.

The diagnosis just means the school know how to help him best. My DS doesn't have an EHCP but does have an IEP.

A diagnosis can be supportive and trust me when I say, 11 yrs of selective eating and no sleep routine totally knackers you out. Your DS is only 3 so by getting a diagnosis now, you can put different and beneficial techniques to support him into place now and at nursery to help him feel less anxious and more able to cope with a stressful world.

Obviously you must choose to do your own thing but I just so very worn down by school when they thought I was just a neurotic parent who was making stuff up!

[HackAttack]

I think after reading all this I'm going to sit down with the health visitor and discuss the referral process, get some information at least. Adrift eating support at the very least would be good as that is one issue I've made very little progress with.

I'll post in a better place next time but thank you all for sharing. It does appear do be time for a rethink.

[Kleinzeit]

What happened to your relative must make this decision so much harder. But with a diagnosis or without I am afraid you may still have to fight discrimination against your DS. What happened to your relative is shocking but would the school have given him the right education and support without the diagnosis? The problem doesn't seem to be the diagnosis, it seems to be the school wanting to ignore the diagnosis and the recommendations that come with it.

Thw downside of not getting the diagnosis is that without it your DS will have less access to support in education (etc), fewer legal rights (e.g. to “reasonable adjustments”) and less access to financial support to meet his needs, although his needs wont be any different. There are no guarantees but these days I’d say that someone with a disability has a better chance of success in life with a diagnosis than without.

It's wonderful that your DS is making so much progress now and his social anxiety has decreased though he might find it harder to cope again when he and the other kids move on to the next stage of social development. So you might want to wait and see a bit? I couldn't have helped DS so much all by myself in the long term but his diagnosis brought him a team of people on his side, from TAs to play workers to psychologists.

And of course your DS has a much better chance with you on his side to fight for him, with a diagnosis or not.

[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

[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.

[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

[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.

[Kleinzeit]

X-post - all the best HackAttack

[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!

[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)

[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.

[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!

[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.

[HackAttack]

Thank you all x

[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.

[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.

[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 :)