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Feeling lost

Chaoticmumof2

Good afternoon, I am just looking for some support / guidance (I think). My son, just turned 17 and has recently received an autism diagnosis but what happens now? I really feel like the hospital have gone yep this is your label go deal with it. With no support, no next steps no follow up no nothing?! Is that what actually happens? 

We have suspected my son has been unique for probably around 10 years, however we have battled with schools as they just wouldn't accept he was any different, he's a people pleaser and excellent at masking. Ill be honest I never expected him to be diagnosed with autism, I thought more along the lines of ADHD however after assessments for both he has been diagnosised with autism only. 

My son leads a relatively "normal" life for a 17 year old, he goes to college, enjoys sport and plays football and cricket. He doesn't go out with friends, isn't great with friendships but I THINK he manages. He has recently got into quite a serious relationship (5 months in) and thinks the absolute world of this girl. Luckily she is a lovely girl, puts up with a lot of his unique ways but sometimes I feel a little overwhelmed by it all and how much it seems to consume him. I feel his life could be so much better (and ours too) if he had some more support/understanding around his autism. 

I think given the fact we have lived like this for so long it's our norm, but surely that doesn't mean we have to accept that and not look to make things better for us all right? 

Im just trying to find out if there is anywhere we can get some support from following his diagnosis. Things we can do and try to make life / understanding smoother for us all? 

Thanks for reading....sorry if I have waffled. 

  • Hi, sorry you ae feeling lost right now. My son is adult now, diagnosed at age 4. Went to mainstream school, very bright but had to battle school hard to get support as very sketchy. Was told he wouldn't get an EHCP because in mainstream which was a lie they used to tell everyone back then, however have know some since with EHCP who still haven't had needs met. I won't sugarcoat it, support is fairly non existent. Only had access to an educational psychologist who only ever replied "well you know him best" so stopped bothering. College was worse than school for him as SENCO did nothing. Found this the worst age as they do get very sensitive about friendships/relationships and feel the pressure of adult life looming. Had referral for CAMHS once, however was turned down when he was 16 as by the time he would reach top of waiting list would be adult because waiting list was that long. Was just a case of getting through it and trying to guide to the next step and give him something to strive for. My son is at University now, goes to the local one so can remain at home which suits. Some Universities give priority to locals if have certain needs. He also gets Disabled students allowance for travel etc. Far better than school or college ever was if that is something he might be interested in?

  • in reply to DigbyDevon

    I haven't, I am still waiting for college to actually acknowledge his diagnosis. I thought school was a battle, I college is going to be harder. 

    Your response has been helpful, thank you for that. 

  • in reply to Anna Mod

    Thank you, Ill be sure to check those out.

  • Dear Chaoticmumof2, 

    Thank you for your post. Congratulations on finally getting the diagnosis. I can signpost you to our advice and guidance pages about further support. You can access them using the tab at the top of the page of following this link:

    After Diagnosis

    You could also see what support is available in your local area using our directory. 

    Autism Services Directory 

    Please feel free to explore any of the topics in the advice section and if you have any further questions, do not hesitate to ask.

    I hope something there helps.

    With best wishes, 

    Anna Mod

  • Hi! I'm so sorry to hear you are feeling lost.

    I'm not a trained expert or anything of that sort but have you gotten an EHCP from the college? That hopefully does open support in college and I think can mean your son can stay in education until 25 on certain courses. 

    It is also worth seeing what local adult social care services can provide, for example travel training or meeting goals such as employment. Mental health services don't have a great reputation, but to be fair adult social care I have found to be very helpful as a user. He may have to wait a year though until he is 18 for that. 

    Sorry if my response is not very helpful, I am in my 20s myself and these are things I found really helpful when I was your son's age.