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New here – Looking for hope and guidance from parents who've been through this

Patrick_001

Hi everyone,

I'm new here and hoping to connect with parents who have walked this journey longer than we have.

My daughter is 6 years old and has autism with significant support needs. We've been doing speech therapy, occupational therapy, and ABA for almost 4 years. While she has made some progress, it has been much slower than we had hoped.

Our biggest challenges are:

  • Chronic gut issues, including IBS-like symptoms, constipation, bloating, and abdominal discomfort.

  • Sleep problems, which affect the whole family.

  • Hyperactivity, sensory dysregulation, and anxiety.

  • Emotional outbursts, agitation, and difficulty coping with transitions.

  • Limited understanding of social cues and appropriate behavior in public settings.

One thing we've consistently noticed is that when her gut is settled and she sleeps well, she's much calmer, happier, and more engaged. Because of this, we're trying to understand whether improving her gastrointestinal health can help improve her overall quality of life.

At the moment, she's under the care of specialists and is taking:

  • Risperidone

  • Fluoxetine

  • Clonidine

  • Leucovorin (folinic acid)

  • Hydroxocobalamin (Vitamin B12)

  • Iron supplement , Zinc and Vitamin B complex

  • Vitamin D

  • Magnesium Glycinate

  • Medications for her gastrointestinal symptoms as prescribed by her doctors

To be honest, this journey has been emotionally exhausting. Sometimes it feels like we're trying everything but still not seeing the progress we hope for.

I'd really appreciate hearing from parents who have been through something similar.

  • Did your child eventually become calmer with age?

  • Did treating gut or sleep issues make a meaningful difference?

  • What interventions or approaches helped your child the most over the years?

  • If your child is older now, what gives you hope looking back?

Thank you for reading. Even hearing your experiences would mean a lot to us.

Parents

  • Hi there Patrick, and welcome to the community.  It is wonderful to have you here, and great to hear how much effort you are putting into supporting your daughter!  I am sure our community will have some great advice for you and answers to your questions, although just due to the nature of your post I would like to just pre-emptively remind everyone of Rule 6: No medical advice.

    Here are some NAS guidance pages that may be helpful for you to have a look at:

    Transitions

    Anxiety

    Sensory processing

    Sleep

    We also have a new service available called Ask ASH, a quick way to find the right pages on our website. It asks you a few multiple choice questions about your situation, then shows you pages that are relevant and useful to you.

    I'd also like to direct you to our Parent to Parent helpline.  The Parent to Parent Emotional Support Service provides emotional support to parents and carers regarding their autistic children/grown-up children. The service is provided by trained volunteers with personal experience as the parent of an autistic child or adult. Our focus is on emotional support and understanding what it is like for you as a parent. We offer empathy, understanding, and a safe space to talk through your feelings and experiences. This is not an advice or guidance service and our volunteers are not trained to advise on specific topics such as behaviour, social care, benefits, education, communication, criminal justice, or relationships.

    I hope at least some of this is helpful to you, and wish you and your family all the best going forward.  Please do feel free to post again to let us know how things go.

Reply

  • Hi there Patrick, and welcome to the community.  It is wonderful to have you here, and great to hear how much effort you are putting into supporting your daughter!  I am sure our community will have some great advice for you and answers to your questions, although just due to the nature of your post I would like to just pre-emptively remind everyone of Rule 6: No medical advice.

    Here are some NAS guidance pages that may be helpful for you to have a look at:

    Transitions

    Anxiety

    Sensory processing

    Sleep

    We also have a new service available called Ask ASH, a quick way to find the right pages on our website. It asks you a few multiple choice questions about your situation, then shows you pages that are relevant and useful to you.

    I'd also like to direct you to our Parent to Parent helpline.  The Parent to Parent Emotional Support Service provides emotional support to parents and carers regarding their autistic children/grown-up children. The service is provided by trained volunteers with personal experience as the parent of an autistic child or adult. Our focus is on emotional support and understanding what it is like for you as a parent. We offer empathy, understanding, and a safe space to talk through your feelings and experiences. This is not an advice or guidance service and our volunteers are not trained to advise on specific topics such as behaviour, social care, benefits, education, communication, criminal justice, or relationships.

    I hope at least some of this is helpful to you, and wish you and your family all the best going forward.  Please do feel free to post again to let us know how things go.

Children
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