The National Autistic Society has carried out research on the reality of adults living with autism spectrum disorders. It’s a sobering read.

I just want to highlight some specific lines in the report.

49% of adults with autism or Asperger syndrome are still living at home with their parents. 65% of these adults have had no community care assess- ments and are therefore unlikely to be known to the statutory agencies who should be supporting them.

31% of adults at the lower end of the autism spectrum are still being cared for at home, despite their high level needs. 45% of parents believed their son or daughter required 24-hour care, and only 15% thought they could live in sheltered or shared accommodation.

Only 3% of adults at the higher end of the autism spectrum are living fully independently, and a further 8% are living independently with some regular professional or family support.

As the report points out Families are picking up the care responsibilities in the UK associated with autism. Repeated Government’s have buried their heads in the sand. The current government unbelievably has probably set the bar even lower.

Like many families around the UK (and worldwide) my thoughts are increasingly focusing on the future. What will happen to Hawklad as an adult in our society which is so badly setup for those on the spectrum. Let’s just say that its currently not an entirely reassuring feeling I have. Yes I’m worried.

57 thoughts on “The future

  1. It’s the same here. I live independently, but not very successfully and my parents are the ones supporting me. Without them, I would probably be on the streets. There’s no help to find in the social system for someone like me. The scary thing is that I am pretty high on the spectrum so if I am still struggling as much as I am with just daily tasks, I fear for the ones on the lower end. They don’t stand much of a chance.

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    1. My husband helps take care of me, but if I lose him I worry about being homeless. I would try to get by, but between my autism, mood disorder, ptsd, and physical problems, I don’t know how I would ever make it alone. It is terrifying. And there really are hardly any resources for higher functioning adults 😦

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  2. Yes, indeed. I understand the worry well. I have seen this here in the States, too. I am so grateful for every step forward my children are taking but it all requires a LOT of support and understanding-something I have seen show up well in some situations and only sporadically if at all in others. I do fear a great deal for their future as a result. They have great abilities and great dreams, but also significant struggles in day to day tasks, particularly anything social. But, this world is not terribly interested in slowing down long enough to adjust itself for anyone who does not fit the “norm”. I unfortunately have a lot of experience with this cruelty myself, so much of it without any clue as to why until I began to recognize my own missed diagnosis. Not that it really helps me navigate any better or differently-just gives me an explanation for the “odd duck” I am.🙂 Still, I am trying to use it for insights into what my kids need and advocating better for them. All I know to do is that and to spend a lot of time in prayer, trying to trust God has it all in hand.

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  3. It needs someone who is affected by autism in a real way to gain a position of influence, a voice, as it were, in the government. But how likely is that? How hard would they have to fight? I really hope there is such a person and that they have tremendous support.

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  4. I am witness to the daily challenges that two neighbors face in taking care of their adult children (one male, the other female) with mental illness. Let me just say that it’s gets more challenging as they become older.

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  5. ((Hugs)) I’m pretty sure that my late sister-in-law was on the spectrum. She lived with a cousin for six months. The rest of the time she lived at home. 😟 We knew we’d have to care for her, but unfortunately her liver deteriorated from a very rare condition and she left the earth 5 1/2 years ago.

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  6. Ben will more than likely need support as an adult. We’ve made arrangements with family and friends, but it’s a LOT to ask of someone.
    We won’t know if Ben wants to live at home with Daughter, or in a group home or what until he’s much older.
    Maybe within the next ten years more supports will happen in US, Canada, UK and everywhere.🤞💌💌💌

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  7. Those statistics seem very depressing. I’m glad I wasn’t aware of them when I started out in life. Mind you I did live with my parents until I was 22. Then the wife and I set up home together, so there’s never been a time when there wasn’t a significant “other” in my life.

    Could I have managed completely on my own? I’d like to think so, but I know I would have a hard time with some things as I tend to procrastinate for some considerable time before I am able make a decision.

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  8. My little brother had Down Syndrome. My father gave me too much responsibility for my age. But later in life, it helped. I worked as a caregiver for many years, trying to help adults of all kinds of backgrounds to live somewhat independently, and gain some form of dignity and respect. It was a hard go. I was forced to leave the field after I advocated for a couple, the woman living at home with her parents, the man living in a group Home worked at. They wanted to get married, but first they wanted to have sex together. Marriage was more like a dream. So I started searching for sex psychologists, or really anyone who might be able to help them learn about the responsibilities of active relationships. Well, didn’t the woman’s mother get wind of this, and phone up the company I worked for, and accuse me of trying to have sex with her daughter. The woman had told her what I was trying to do for her, but the mother wasn’t listening. She heard my name and sex in the same sentence, and went berserk. I explained to my employers what was going on, and though they understood, they were so afraid of the mother they fired me anyway. The mother also blackballed me from ever working in the field ever again. The company convinced her not to press charges, but they warned me she would if I tried to work with people like her daughter ever again.
    So, at 54, I went to university to get my BSW so I could find a different way to help people, but despite graduating with distinction the only job I could get was as an addictions counsellor. I am retired now, but I have seem the plight of people who are not considered normal from various viewpoints. I wanted to help, but could not. I hope the woman I spoke about found a way to get away from her overbearing mother. She may have had good intentions for her daughter, but she was never going to let her little girl become a woman, not as long as she could stop it.

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    1. It’s such mess. What works for one person maybe the worst thing for another person. Too many fall between the cracks and are in a real bad place. That’s why it’s criminal here that what support that does exist is often withdrawn at 18

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      1. It happens here, but there are places where the care for adults is adequate, if not great. At least we try. The general populace seems to be split about 50/50, or it was before Trump. Out in public many people would offer to help if a client had a breakdown, or whatever. Then there were the others who caused the breakdowns by telling us we should not be allowed in public, that if a person had to have help they did not belong in public. Shut them all up in some backwoods hospital so no one would ever have to look at them. People, supposed adults, can be so mean. They have no idea.

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  9. Please bear in mind that these stats are based on diagnosed autistic people only. And on a survey of parents at that. There are loads of autistic people who are living happy, independent lives who are undiagnosed so the stats get skewed. Also their use of functioning labels shows how out of date the NAS are.

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