First post - complex needs


My husband and I have three boys. Our eldest has Down Syndrome. He is five. He has to have routine and has had a  significant three year plus delay in all areas. He is now in a SEN setting. It has been picked up that he has autistic traits. He is now awaiting a panel for a formal diagnosis. He has complex medical needs so this has been very tough. We didn’t know too much about autism and assumed his routines and structure needs were down to his learning disability.

Our second son is somewhat quirky. He is 23 months. He walks on tiptoes, non verbal, avoids eye contact. Doesn’t respond or understand what is said. Shows no interest in toys, loves collecting red pegs and blue and red pencils. He has no interest in drawing, communicating or engaging. He runs everywhere and is always moving on to the next thing. He will not sit with me and will not initiate a kiss or hug. He will only hug me from behind with his arms around my neck. He shakes his hands when excited or mad. He rocks for long periods making funny sounds. He also bites his hand and scratches the back of his neck.  The HV and nursery have highlighted there are areas of concern and a Peadiatrician referal has been made. He’s failed three hearing tests. The audiologist is convinced he isn’t deaf but isn’t sure why he isn’t responding. So another referal to ENT has gone in. Reading up about my eldest has made me think my 23 month old is autistic. His behaviours are different to my eldest and even more challenging. 

Has anyone had experience with two children on the spectrum? Is 23 months too young to worry. We have recently had our third and final child. I am concerned with my eldest two as both have such different routines. Is there something I could have done differently to prevent this? Once seen by a peadiatrician how soon will he get a diagnosis?

Thank you for reading this 

K x

  • Hello K,

    I don’t have experience of coping with autistic children but hopefully by bumping you up the post listings, someone may be prompted to offer practical advice. In the meantime here is a link to Child Autism UK that might be of some use or interest.

  • Hi NAS37931,

    I'm sorry to hear that you're going through a tough time and understand that it must be challenging to cope in your situation. There is support out there that you can tap into and a wealth of information.  In addition to Graham's helpful link, you may like to contact our Autism Helpline team who can provide you with information and advice . You can contact the team via telephone on 0808 800 4104 (Monday to Thursday 10am to 4pm, Friday 9am to 3pm). Please note that the Helpline is experiencing a high volume of calls and it may take a couple of attempts before you get through to speak to an advisor. Alternatively, should you prefer to send a message, you can do so via their webform:

    We also have the Parent to Parent service who offer emotional support to parents and carers of children or adults with autism. This service is confidential and run by trained parent volunteers who are all parents themselves of a child or adult with autism . You contact the team on 0808 800 4106. Please leave a message and the team will call you back as soon as possible at a time that suits you, including evenings and weekends. Alternatively you can use contact the team via web form:

    I hope that helps.  

    Kind regards,