AIBU to not pursue an autism diagnosis for my child

[pondersome]

I am autistic, as are a few of my close relatives. We were diagnosed as adults.

I think my preschooler is autistic. But if so, it is mild. He attends a great nursery and no concerns have been raised.

I feel that I understand him well enough to advocate for him, and guide him through the parts of life he struggles with. I don't feel that my husband and I would do anything differently if he had a diagnosis.

And I think that his needs are mild enough that he wouldn't need, or be offered any specialist therapies or support.

Obviously, if there is some support he needs but can't access without a diagnosis, we would get one. And if he ever wants to pursue a diagnosis, that would be his decision.

I just don't see the point right now. It wouldn't change how we parent him. It wouldn't unlock any special support. He doesn't need any special support as far as I can see.

I don't want to go in to the specifics of his 'symptoms' on a public board, but he doesn't currently need speech therapy, or help with motor skills etc.

Am I being unreasonable? Are there therapies that a mildly autistic 3yo could benefit from?

You and your son’s Carers may experience his autism mildly but it doesn’t mean that your son does. I know of a lot of people through online support groups who got an autism diagnosis later in life and it helped them understand themselves but they wished they’d had it sooner so as not to go through feeling different and not having any adjustments made for them.

It might unlock money and support for him later down the line especially at school.
The processes and procedures you have to go through for a diagnosis can be long.
By the time you have anything definitive he could be at school.
Only you can decide what best for him though.

But we do make adjustments. And we advocate strongly for others (relatives, carers, teachers) to do so as well. Until we reach a point where someone refuses to make those adjustments, why get a diagnosis?

We will be open about our own issues and discuss how many people experience the world differently. And of course the option to pursue a diagnosis will always be open to them.

@Smartiepants79 do you know what sort of support? As I was diagnosed as an adult, I am not aware of what is on offer. But the things I have heard of wouldn't be helpful to us.

I would get the diagnosis, it might not get him a lot of help but it might get him more understanding. It might also make it easier for him to get access arrangements for exams at secondary school for example if a prompt would be helpful (to remind him how long he has left) or short breaks. It might make it easier to get him sat at the front of the class if he can't filter out distractions or a fiddle toy if he needs some kind of sensory input. There are so many ways it just might make things a little easier that I would definitely get it.

You are clearly very insightful to your son’s needs but by not pursuing a diagnosis for him you are potentially putting him in a vulnerable position in the future. The wait from referral to assessment and consideration of a diagnosis is long in many areas. Whilst you can advocate for him well there is a risk that he, and you as parents, will come to a barrier to resources “no diagnosis, you’re not getting in” and then face a lengthy wait to go through the diagnostic process during which he misses out. He himself might want a formal assessment and diagnosis as he gets older, to understand himself and how his perspective on the world may differ to that of someone who is neurotypical. Again, waiting for this may not be good for him.

Personally I can’t see why you would not want a diagnosis if it’s appropriate?

I take your point @Tal45

I just worry that the disadvantages of being judged and discriminated against, even in the form of low expectations, will outweight the advantages. I've never found any good to come of disclosing my own diagnosis.

If it ever reaches the point that he needs to be sat at the front of the class, or such, then I would try and sort something out with the school, and pursue a diagnosis if we didn't get the adjustments we needed.

But right now, I don't think he will need even such minor adjustments.

@Ikeameatballs that is one of my worries. Although we are lucky enough to be able to fall back on private care and homeschooling to tide us over, if necessary.

My reservations stem from the fact that I worry he will assume there are things he cannot do. That people around him will assume there are things he can't or wouldn't want to do. That all his behaviour will be seen through the lense of his diagnosis. That he will be patronised by those who mean well and excluded by those who don't understand.

I think there are a lot of things I wouldn't have attempted in life if I had been diagnosed as a child. And I have never seen much good come of disclosing my own diagnosis.

I guess what I'm asking is: are there interventions that he is missing out on now, that I am unaware of? Would a mildly autistic preschooler, or reception age child be offered any practical support?

Honestly OP you need to get him a diagnosis- think of it this way: no one needs know about it until you need them to.

Do you think he would meet the criteria? It's a high bar and unless he has having severe issues the waiting list is massive, so it can be worth getting the ball rolling early.

My ex is autistic, and I always knew that DD was different, before either of them were diagnosed - but others said she was just quirky, or clever, or a tomboy - and so by the time she was into the middle years of primary school and her social differences in particular were becoming more and more apparent, it was very hard to access meaningful support. We had to jump through hoop after hoop of going to parenting classes, talking to social workers, getting more info from school, going back to the gp, etc, only to be told the wait was over 2 years. And this was with a child saying she thought the world would be better if she died.

If he really seems to be happy and meeting milestones in every way and you can afford to go private and skip the queues later I can see a reason to pause. If it's anything more than that, or you couldn't afford the 4-figure sum it will cost for a reputable and thorough private assessment, then I'd talk to your gp now.

Well, yes, his school may well be able to offer him certain extra support if they think he needs it.
Small group interventions etc
It’s difficult to say what they might offer as I don’t know what his needs might be.
My issue, as I said is the timescales involved. By the time he needs support you could then still be waiting a further 12 months or more for proper assessment.

It is very advantageous to have a piece of paper to ‘prove’ the autism. Requesting a special consideration for your child in school (different clothes/food, extra movement breaks, intense dislike of sharing, [insert any tiny thing you do to make your child’s life better]) carries so much more weight if you can preface the request with, ‘because of xxx’s autism...’. School are then pretty much obliged to do something. Without a dx you will sometimes find you are dismissed as an overzealous parent.

It's an 18 month wait for face to face assessment for under 5's where I live- the waiting list for over 5's is much longer.
If it was my kid, I would get them referred now and use the 18 months to think about it.
If your son gets the autism diagnosis, no one else needs to know until the time comes (if it comes) that he needs support.

There's no such thing as 'mild autism'. In order to get a diagnosis there must be "persistent difficulties" in the triad of impairments that "limit and impair everyday functioning".

It is much better to get a diagnosis before things fall apart. Early intervention and recognition is important. A diagnosis can bring a sense of understanding of oneself. Not to mention the legal protection. Why would you wait until adjustments are necessary but not given to seek a diagnosis when it would be much better for all concerned to get the diagnosis to try to prevent a situation where adjustments are necessary but refused?

A diagnosis will help when DS starts nursery or school. Support should be needs led, but it easier to get those needs recognised when there is a diagnosis. You can't know what support DS will need as he gets older. A diagnosis may mean he has enhanced transition and will be on the SENCO's radar from the start. He may need sensory support or adjustments, OT, ELSA, social skills support, visual timetables, now and next boards, social stories, SALT (SALT is about much more than the physical act of speaking, and it is highly likely a 3 year old with ASD would benefit from SALT... Not having a diagnosis may mean the school can not get advice from the specialist autism teaching service.

What about sensory needs? Clubs/sessions for those with additional needs or autism specific clubs?

Before my DS was diagnosed he was constantly told off, lost break times, had rewards removed - he was viewed as a naughty, disruptive child and was never challenged academically so was also bored a lot of the time which made his behaviour worse. Yet he shone when he had a teacher who took the time to use PDA type techniques with him and supported him through the diagnosis process. It's only helped him.

But we do make adjustments. And we advocate strongly for others (relatives, carers, teachers) to do so as well. Until we reach a point where someone refuses to make those adjustments, why get a diagnosis?

Because, as everyone has said, it isn't just a case of "getting a diagnosis" in the same way you might 'go and buy pain relief if you have a headache'. A diagnosis takes years. By the time you reach a point of someone refusing to make adjustments, your ds is already going to be struggling. I think at that point you will regret not being able to demonstrate his needs with a confirmed diagnosis.

However as a pre-schooler, he will only get a diagnosis if his differences 'have a significant impact on his life' , which do not seem to be the case from what you describe.
What you need to establish objectively is how much of an impact any differences he has are having without your adjustments. You say no concerns have been raised with you by Nursery. Have you asked them what they think ?

Minority view here, but I agree with you Op.

As for the "support" available, you've only got to look at these boards to see how parents battle for it, and then kids seem to be discharged of have to go private anyway. Many seem shocked that after diagnosis they just get handed a few brochures.

I'm with you on the nothing-good-ever-came-from-disclosing in relation to my condition (not ASD) and you've only got to look at how those with ASD or learning and other disabilities were put on DNRs without consent during the first wave to know that anybody with a disability is seen as less valuable when push comes to shove.

If I were you though I'd think in short term chunks. So for now, he's coping fine. If that changes, you may change your strategy.

As for it taking years, that doesn't really mean you should do it. Always possible to get it privately anyway.

Op, with the greatest respect, your child is only a preschooler at the moment. You cannot possibly predict their needs as they continue in education.

I speak as someone who is looking at an impending and rather late diagnosis for my teenage son. Had it been recognised sooner, it would have saved us years of anguish .

I think the problem could be that if there comes a time, say at secondary school, when he really does start needing more support, you might find that there is a very long wait for a diagnosis, or, that he won't engage with the process. Whereas if it is done now while he is young, he won't even remember going through the diagnostic procedure and it will just be part of who he is and there for you and him to fall back on if you need justification for extra support.

I don't mean BTW that you need to do it right now, this minute. I delayed till mine was 7 for similar reasons, but I am SO glad we did it then while he was still being well enough supported in school, he engaged fully with it and it was invaluable when preparing for and choosing secondary school. Things change so much, mine was managing fine at pre-school age but ended up with an EHCP by the time he left primary school, he was also eligible for DLA and then PIP.

Because when someone does refuse any support the diagnosis will take ages and meanwhile your DC may suffer. I see this often in my work. He is happy in nursery but his needs may change in primary. As you know ASD is a spectrum, no one is mildly ASD, although they can have a lesser degree of symptoms. However as their environment changes different needs or strategies can become necessary and support won’t be there without the assessment. And private diagnosis really doesn’t get the support the child needs, IME.

I don't think you are being unreasonable, but I do think that you need to review/revisit the situation every so often as things may look very different when your child is in school.

I pushed for my son to be looked at (though not specifically for autism) at that age and found the whole process very frustrating and negative - lots of appointments that were very stressful for both of us (he still remembers the blood sampling ordeal 'as if it were yesterday'). It did not result in a diagnosis, but did result in some useful advice from the OT and the physiotherapist.

Fast forward a few years and we've had him assessed privately (aged 9). He was not doing too badly at school but becoming increasingly aware of his differences and feeling bad about himself. We have always talked a lot about how people are all different as DS has a minor but obvious physical difference as well. One day he was chatting to me and just said "do I have autism?" (he's very well read), so that was when I decided to get him assessed. Having a diagnosis has helped him feel a little more confident and understand himself better. I agonised about it beforehand but with hindsight I should have done it sooner.

I think all kids with ASD could do with some support - for example, social skills classes have been extremely valuable for my son (he is also high functioning and likes playing with other kids, but there are certainly differences. We are hoping that by learning the skills there won’t be such a big difference when he gets to secondary, which many people on these boards say is when social differences really start to show).
The classes and input from the therapist has also shown me things I hadn’t realised myself, for example just how much he struggles with non-verbal communication.

@Bigcitylights

I think all kids with ASD could do with some support - for example, social skills classes have been extremely valuable for my son (he is also high functioning and likes playing with other kids, but there are certainly differences. We are hoping that by learning the skills there won’t be such a big difference when he gets to secondary, which many people on these boards say is when social differences really start to show). The classes and input from the therapist has also shown me things I hadn’t realised myself, for example just how much he struggles with non-verbal communication.

That does sound like excellent help. Wonder if you are in the UK?