In life you get asked so many questions. But some questions keep repeating themselves. Like the classics ‘Are we there yet?’ and ‘where’s the remote control?’.

Then there are other questions. More vexing questions. One question keeps popping up. I’ve been asked this by family members, other parents, teachers and even once a nurse. It does have a number of variants but it’s basically the same question

Will your son get better?

Will his Aspergers improve?

Will his Aspergers improve as he gets older?

I’m no clinical specialist. Just a bumbling parent. But here’s my take on the question.

Aspergers is a lifelong syndrome. It’s not going to get better. Its not going to be cured. It’s not going to disappear. What might change is that over time the individual and the family may develop strategies to help deal better with some of the situations life will throw at them. Also some of the specific symptoms may fluctuate over time. For example in a number of individuals something like repetitive hand flapping may become less prevalent with age. Also Aspergers often coexists with a number of other conditions – dyspraxia, ADHD, dyslexia…. It is possible that some of these conditions could improve with time. For example our son has with hard work started to overcome some of the issues which his dyspraxia and dyslexia had caused him in his earlier years.

So yes it is possible that improvements may occur. But here’s the thing, it’s not guaranteed. Each individual case is different, unique. Things may stay the same with age. They can also get worse with age.

So we just don’t know.

The Clinical Psychologist who did the full review of our Son was quite clear. The majority of his Aspergers related traits will stay with him over his life. However at around the teenage period changes may start to occur. It could go either way. He could become fully independent or he may regress and may need some form of life long support. She talked through a number of possible scenarios. One scenario was that some improvements would occur potentially in the areas of dyslexia and the diminishing of some of the repetitive behaviours. Another scenario painted a downturn in his existing anxieties and fears. This could occur naturally during his teenage years or could be triggered by a single significant event which effects his view of the world. Tips the balance in his risk assessments of the world. This could lead to significant mental health concerns and potentially social isolation. Where we are sat currently, we are not a million miles away from that scenario. The triggers – the death of his mum, a pandemic, his teenage years…. He is currently physically cut adrift from the world. His fears and anxieties ramped up to the rafters.

Nothing is set in stone. We just have to go with the flow and see what life brings. It could be still be a fully independent life. But it could also entail a lifelong requirement for support. In this country we don’t cater for the latter scenario. Support has to be fought and won for young children. That support is at best is patchy. During the teenage years the support tends to be reduced due to funding cut backs. By early adulthood the support has completely vanished. That’s a sobering thought for parents in this position. It really is.

70 thoughts on “Which way”

  1. Yes, true. No support, or have to fight for it.
    Support only seems to happen in my experience when the worst case scenario happens. But had there been support, it may have made things a little easier.

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  2. I totally agree with what Liz has said. I am so sorry that all this is happening for youGary. I know what it is to have to fight, and not get anywhere. I hope that the scenario for your son is of the better variety. Much love to you xx

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  3. as someone who deals with maladaptive daydreaming myself I thought that my situation was hard to combat and I was crying over it but your perspective towards the disorder is very insightful
    thank you for writing such great blogs I will be waiting for more in future.

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  4. It’s a major concern. While my nephew [with Aspergers etc] holds down a job in retail, he continues to live at home and his parents feel that he’ll never be truly independent. His older brother therefore accepts that at some point, he’ll be responsible for his younger brother. At best it might just mean managing his finances, at worst……who knows?

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  7. Praying for the best for your son in the future and for you as there are so many questions and no answers and can definitely be scary! Prayers that society can be more supportive. I know a radio DJ that has Aspergers, he is very open about it on the air and the struggles he deals with. He has a great sense of humor, like your son. 🙂

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  8. Parenting is never easy for those who take their responsibilities seriously; for you, facing what you do, and still making place for us in your heart, it’s beyond imaginable.

    I pray the dawn breaks for you, Gary, and soon.

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  9. There is no way on knowing, obviously, and fate has certainly provided some challenges but no parent could be taking on those challenges more courageously, Gary. I feel a positive outcome in all this for you. XX

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  11. That’s such a beautiful photo. Thanks for sharing so much about the realities of autusm. Everything you’ve written has been such an eye opener, both to the challenges for child and parent, and also how amazing, intelligent and funny each child can be. Hawklad deserves so much more…. all of his life. Support should never be cut off. There should be so much more support for those who needs that extra help. Thinking of you both. Praying for you as well. ❤

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  13. I don’t know what Ben’s future will be like. More than likely he will need support for the rest of his life. Whether that’s living at home or in a group home environment, only time will tell.
    His school does vocational and “life skills” training for the older students. He can continue at that school until age 22. We are SOOOO lucky to have Ben there.
    All we can do is our best to support them now. Help them navigate a world that isn’t set up for them.
    And love them! WE can do that… easily!💌💌💌

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  15. I’m sorry for your burdens. I don’t know what else to say. The only experience I can relate to the struggle of Aspergers is a fictional one of the character “max” in the tv series “Parenthood”. Has anyone seen this portrayal and what do you think about it? It looks like quite a challenge. If not, maybe you can relate to it – like you have the time, I know. My best to Hawklad and take care of yourself, too.

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  16. Yep. Familiar questions, indeed! Heard them all at various points. Now, more so than ever, perhaps, as we face the balancing act with our oldest spectrum boy being somewhat independent at college yet still needing our support, especially concerning social anxiety, time management, and finances. There is much success thus far but still a lot of need. Our spectrum daughter is just starting high school and seeing much growth as well yet her case has also always been more profound, requiring a lot more supports throughout the day. She dreams of stage and screen and I would never say never, but I do fear for her in many ways. She is so generous of heart and easily led. I expect she will need lifelong looking after, for her safety if nothing else. I plan to be there for them as long as the Lord allows, of course, but, beyond that, my two neurotypical (I hate that word, really. What IS typical, anyway?🙄) boys are sworn protectors of their siblings. I don’t want to volunteer them, as they have their own hopes and dreams, but I know their hearts well enough to know they couldn’t sit by and not provide help. That said, I heartily agree more should be available. These kids should not grow up to face a world that cuts them off from supports.

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  18. Praying that the Lord will show you step by step, little by little, new ways to try to help him. I pray for encouragements to come his way and yours as well, the kind of things that will give some joy and bring out his sense of humor in greater ways. Laughter can bring healing in areas where healing is possible even though it can’t cure his condition. I pray you will see little improvements from time to time to lift your hope and his. God bless you both.

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  20. That’s a lot, too much, to contemplate. Just try to take it day by day and try to focus on the small, good things. Sending love and light. 💕

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  21. I don’t like that you don’t have support …I don’t understand your country and their ways with that.

    And you can’t really look ahead like that. I know you want to… but you just can’t

    You have no idea what life will give you at any given moment

    We take a lot for granted

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      1. Well what people have on their plates is just how life plays out. Sometimes hard things are blessings – just depends on the view

        Every day is a blessing even when hard.

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