Hi there,
My DS is nearly 5 and now at a specialist school for kids with ASD (best decision we ever made, he is a different boy, thank God someone wise nudged us away from mainstream). His ASD was suspected from 2, but we only started to realise how disabled he was when he is from about 3 onwards. He's now officially diagnosed. I totally understand how you feel and am still adjusting/reeling. I still feel jealous of other families. Seeing other posts on here from people with old kids with ASD is really helpful.
I think you do need the Pollyanna version of things a lot of the time as if you had to face the worst all at once it would be paralysing for you, but I also think you need to let yourself have the bad moments. I get sick of all the effing positivity at times. For us, ASD is a hard slog, there are punch in the air moments, but they are rare and for something so small for other parents (my son said the word 'book' yesterday - I am welling up thinking about it, it was so huge). It is completely fair enough to feel envy, anger, despair etc, but probably not healthy to let them take over. I have been surprised at times that people with NT kids have many of the same issues and it's been a useful wake up call.
We had a DD just as we were learning DS was going to have issues. I can say this anonymously: she has been a lifesaver at times. We don't have anything like enough time for her and the professionals have said she will have to come second an awful lot, which is really hard, but seeing someone develop on a normal track, having her fun and laughter has been a great antidote. I would do anything for my son and I do have some fun with him, but it is not the same. I would do anything for something that would make things a little better for him.
Anyway, having unloaded, this was not the point of my post. I am worried you've been discouraged from applying for DLA. DLA is 44 pages long and it will take you weeks. Things will move on even during that time. You will need to provide copies of every bit of professional evidence, however, if you have a diagnosis I think you have a good chance of getting it for the care side. The DWP actually wrote to me to tell me my son may qualify for the mobility side too once he reaches five, so I've just completed the 33 page form for that (have had it since October, haha). The reason DLA is important is that it is a passport for other things. DS is huge and needed a special needs pushchair from about three but didn't get one until he was four and a half because a) we didn't know and no-one tolds us, b) it takes ages and c) the NHS contractor changed halfway through and then screwed up and d) it helps to have DLA first. Eighteen months of DS dragging his feet along the floor or having to hold his legs up or us having to tilt our buggy. We also got a blue badge on the back of having occupational therapy (OT) and DLA. DLA meant that I could apply for carers allowance which means that it is not so bad financially that I I've not been able to go back to work yet. We do spend more than other families for various reasons which might not be apparent to you yet.
Even if your son's issues iron out with time, you should sooooo be getting a whole load of help, but this is dependent on where you live (try the NAS helpline for info). We originally started with speech and language therapy (SLT) and DS's nursery, who were very sussed, got in the local authority SENCO. The result of this was Portage play therapy (essential support for you as well as your DS) and extra funding at nursery. Through Portage we learnt about OT and through that we got specialist equipment. Portage also advised me on how how to fill in the DLA - very important - and provided a reference for DS, which you also need. Portage also ran a group, which was the start of our support network and a passport into the SEN club - which gives you an alternative to the club of parents whose kids don't have a disabilities. I have really started to appreciate our specialness as a family through being part of that club. I've had a high five with a stranger in motorway services because we got into conversation about mobility buggies. There are loads of us out there. And if you're like me, you'll get sick of people whose kids don't have ASD telling you about ASD because they know someone else whose kid who has it.
Your son may not need all of these things, but they all take so much time to learn about and to get that I'm trying to give you the heads up. You should be at least getting Portage so that someone who knows what they're doing is helping you. Look up their national website and ask your local authority if they offer it. If your son does have ASD, early intervention (meaning therapies that will draw him out, help him to interact) is really important. In the US or Canada they think that means 3 hours a day minimum five days a week (and they don't just mean ABA, for those who know what I'm on about). We are light years away from that.
I wish you lots of luck. Any advice wanted on DLA, message me xx