Advice please... mum of a 3 year old currently going through the process of being diagnosed with Autism.

Hi, 

I'm a mum of a beautiful three year old boy who was referred for some extra support at 2 and a half years old due to poor speech and language. He has so many autistic traits but at the same time he doesn't tick all of the boxes. He loves loud noises, bright lights, lots of very stimulative activities where he is always moving and running about. He is very picky when it comes to food and textures and will not touch anything remotely slimy. He has his favorite toys, currently Woody and Buzz, and finds sharing and turn taking distressing to the point he will smack and hit himself in the face. He says a few words but nothing in context and its very repetitive and said exactly the same way each time. 

My son is now three and although he is incredibly intelligent and so loving, he really does lack the skills and development that is expected of him at his age. We are still waiting on an official diagnosis but it is becoming more and more likely that this is the route we are going down. We're yet to get some decent Speech and Language support for him, its all very stop start, and we've yet to see a pediatrician. I currently feeling like Im head butting a brick wall. 

Just looking for some tips on coping with a toddler with autism and finding ways of actually coming to terms with this as parents. Myself and my husband are so open minded and accepting, but our families are struggling to understand that our little boy has additional needs, we're constantly getting the 'leave him alone he is only a baby', which is soul destroying when all we want is support. Is it normal to find it so difficult to accept? 

I am really lucky that I have a best friend who's son is 9 and has autism and have experienced so much with her, however it is so different when it is your own child. She is so supportive and really offers so much help. but I just feel like I cant say how hard I am finding it because she seems to cope so well. 

Its a daily struggle coping with the judgement of everyone else and I feel so alone! 

Are there any other parents out there who feel the same? Does it get easier?! 

Thanks 

D :) 

Parents
  • Hi,

    you are definitely not alone, but it does get easier. My daughter was put for extra support at 2 1/2years because of her speech and language delay , and as you said help was very stop and start. She couldn't deal with groups of people, and always seemed alone in social places. She too was a fussy eater, and ticked many boxes in regard to possible autistic traits, but on the other hand wasn't bothered too much of loud noises etc. She became very aggressive , and would obsess over things. She was referred to the umbrella pathway at 5 1/2 years old, and after 2 1/2 years, she has just been diagnosed with ASD.

    This came as a shock as I knew she had traits, but didn't think she would receive a diagnosis and I found this hard to accept at first.. But this diagnosis was a blessing, it wasn't a label ,but it gave us a key to open doors to access help that otherwise would be inaccessible. 

    The process can be very long, but at one point I felt so alone and overwhelmed I approached the local healthcare trust who signposted me to a home school link worker, who then enrolled me onto this triple p stepping stones classes, which helped greatly. It enabled me to get the violent outbursts under control, and to understand my child , but more interestingly it changed my expectations from my child as they were unrealistic, and her frustration has to a degree gone.

    I know you can access these courses online, but also through children centre, health visitors etc. It's definitely worth a look. One thing I would of done differently though, is use the tools they offer. The speech and language team gave us visual timetables , and social stories to use whilst we were under referral but I didn't as I didn't want to encourage this reliance, but it was the worst thing I did as now we've implemented them- transitions are easier and my child is more happy and less anxious. I can actually go food shopping with her, and take her to the dentist or doctor.

    Social stories are a brilliant tool if used properly.

     As for being judged by others ignore it, no one is perfect. Family members can be the worst, its easier said than done.

    I hope you don't feel alone. and this helps. It does get easier :)

Reply
  • Hi,

    you are definitely not alone, but it does get easier. My daughter was put for extra support at 2 1/2years because of her speech and language delay , and as you said help was very stop and start. She couldn't deal with groups of people, and always seemed alone in social places. She too was a fussy eater, and ticked many boxes in regard to possible autistic traits, but on the other hand wasn't bothered too much of loud noises etc. She became very aggressive , and would obsess over things. She was referred to the umbrella pathway at 5 1/2 years old, and after 2 1/2 years, she has just been diagnosed with ASD.

    This came as a shock as I knew she had traits, but didn't think she would receive a diagnosis and I found this hard to accept at first.. But this diagnosis was a blessing, it wasn't a label ,but it gave us a key to open doors to access help that otherwise would be inaccessible. 

    The process can be very long, but at one point I felt so alone and overwhelmed I approached the local healthcare trust who signposted me to a home school link worker, who then enrolled me onto this triple p stepping stones classes, which helped greatly. It enabled me to get the violent outbursts under control, and to understand my child , but more interestingly it changed my expectations from my child as they were unrealistic, and her frustration has to a degree gone.

    I know you can access these courses online, but also through children centre, health visitors etc. It's definitely worth a look. One thing I would of done differently though, is use the tools they offer. The speech and language team gave us visual timetables , and social stories to use whilst we were under referral but I didn't as I didn't want to encourage this reliance, but it was the worst thing I did as now we've implemented them- transitions are easier and my child is more happy and less anxious. I can actually go food shopping with her, and take her to the dentist or doctor.

    Social stories are a brilliant tool if used properly.

     As for being judged by others ignore it, no one is perfect. Family members can be the worst, its easier said than done.

    I hope you don't feel alone. and this helps. It does get easier :)

Children