What does the future look like for a child with autism and associated learning difficulties?

Hi

I’m looking for some insight from parents or family of young adults who have had known autism and associated learning difficulties from an early age.

My daughter is 5, and has autism and global development delay which was diagnosed at age 3, and as she’s grown we’ve come to realise that this includes some quite severe learning difficulties. I want to know more about what her (our) future might look like. I’m not afraid of the possibility of her needing lifelong care from me, but as an autistic person myself I don’t cope well with uncertainty. I’d rather have some sort of a picture in my mind so I can prepare for it.

She is essentially non-verbal, in that she doesn’t use words to communicate, but she talks a little just for her own amusement, like reciting scenes from Peppa Pig. But she doesn’t make eye contact, she ignores other children, she doesn’t follow instructions, and she can’t pay any attention at all in school. She can learn things (she is toilet trained, she can dress herself, she can count to ten and she is learning PECs), but learning takes longer for her.  Due to her autism she has no awareness of danger and so she still needs supervision 100% of the time like a baby or small toddler would, and if we go out we have to keep hold of her hand. She currently attends mainstream school due to a massive shortage of SEN school places in our area, and so her EHCP needs are not being met (appeal tribunal pending). The Speech and Language Therapy service are minimally involved , they say there’s nothing they can do until she can pay attention, but as she can’t pay attention due to her autism or adhd it seems like that day will never come.

Does anyone have experience of a child with a similar profile at age 5, who can give me some idea of how children like this present as young adults? Is it likely at this point that she’ll always live with me and require a high level of support and supervision? What happens when they leave school, is there any community support at that point or is it 100% on the parent from then on, and if so, what do you do to fill their days? Is PECs the best we can expect in terms of communication? Is it safe to assume that she’ll probably never live independently or have a job or partner? Is that realistic or am I being pessimistic?

No one in a professional position has been willing to give me any sort of answer to this question. I understand why - it’s impossible to be 100% certain, and they don’t want to give an optimistic answer in case they turn out to be wrong, but they don’t want to give a negative answer and potentially upset me or be seen as discriminatory. But I’m not asking for someone to allay my fears, I just want as much information as possible so that I can feel better prepared.

Right now I feel like I’m drowning in information about how autistic small children present, and I have a pretty good grasp of what adult life is like for high functioning autistic adults since I am one myself. But I know nothing about adults with autism associated learning difficulties, and internet searches always seem to take me to information about children, not adults. 

Any insight anyone can give me would be greatly appreciated.

Thank you