Such a long time for a diagnosis

Reading the length of time some people wait, I feel a bit embarrassed complaining! I'm a Mum of 2 boys. I noticed differences in my eldest around 18 months. At one point I thought he had OCD when he began lining things up/grouping things together! His behaviours have become so challenging. We had a speech therapist assess him privately as he was showing no signs of speaking at nearly 2 yrs. She concluded he was on the autistic spectrum. So we applied for a referral through the GP. We got an appt 5 months later. The speech therapist said I would prob be offered help from an OT as well as speech therapy through the NHS. I was over the moon to get an appt with a paediatrician. But all we came away with was an appt for a hearing test (which my son had a few months ago) a referral to speech dept (9 month wait!) And a vague diagnosis of him being on the autistic spectrum. They will assess him again in 6 months time. I realise he's still young, and they want to see how he develops, but I was hoping at least, for some advice on managing his behaviour. It's very hard taking him out now as he always has a meltdown about something and kicks and slaps me. I get so embarrassed as people sometimes look on in shock. My husband works long hours 6 days a week, and is in denial. So I'm basically on my own with this. Any advice would be greatly appreciated! x

Please don't feel embarrassed.  From what I have learnt so far is, these feelings are all natural.  I noticed my (Jane) was probably autistic at the age of one.  She had a huge obsession with jigsaws, she would do them for hours, over and over again.  and lining and grouping things. (she is eight and does 500 pieces now)  I have lovely Easter photos, where all eggs are grouped according to size and colour.  This has happened every Easter!  I too discussed it with my husband and mother-in-law (sadly both passed away, mum 2014 and husband May this year).  And like you didn't want to know.  They thought the behaviour was just naughty or anything apart from it being Autism.  They were probably scared of a stigma.  

I am not a marriage consellor so cannot comment how to help with this area, but you are not alone now, as you can talk to anyone here!

The purpose of the long diagnosis, is impart lack of doctors (half my reason), but also because they want to check everything first.  Hearing problems are renowned for people with Autism, but also your child could be having hearing issues, meaning he cannot pick up words leading to speech issues.  

My daughter has required 3 sets of grommets so far.  I (nor my husband) noticed she had a hearing deficiency, we thought she was just ignoring us.  She would watch the telly, but wouldn't ask for it to be turned up, she just watched the pictures.  It was only when she started school that at the age of 4 her teacher noticed.  She would split the room in two - send one set to one end and the other to do something else.  (Jane) would go to the wrong group.  

I have had to have, speech and language, school nurse, ENT, GP, School and another person (can't think of their title) all do different tests on (Jane).  These were all outside of the actual autistic questionnaires (we had two) and tests the Paediatricians did.  Her end result is she has hearing issues, she still needs speech and language as she has had a stammer and understanding is awful, but more importantly she is Autistic.  In the end it is worth it.

When (Jane) had a meltdown prior to diagnosis, it was terrible and I would tell people we think she is Autistic and the looks were a little better.  To be truthful, I stopped going anywhere.  My husband was too ill and was wheelchair bound, needing many other things, my son was a baby and (Jane) when kicking off was horrendous, running away etc. with a baby and a wheelchair.

Sorry waffling on a bit. 

Take care

Reading the length of time some people wait, I feel a bit embarrassed complaining! I'm a Mum of 2 boys. I noticed differences in my eldest around 18 months. At one point I thought he had OCD when he began lining things up/grouping things together! His behaviours have become so challenging. We had a speech therapist assess him privately as he was showing no signs of speaking at nearly 2 yrs. She concluded he was on the autistic spectrum. So we applied for a referral through the GP. We got an appt 5 months later. The speech therapist said I would prob be offered help from an OT as well as speech therapy through the NHS. I was over the moon to get an appt with a paediatrician. But all we came away with was an appt for a hearing test (which my son had a few months ago) a referral to speech dept (9 month wait!) And a vague diagnosis of him being on the autistic spectrum. They will assess him again in 6 months time. I realise he's still young, and they want to see how he develops, but I was hoping at least, for some advice on managing his behaviour. It's very hard taking him out now as he always has a meltdown about something and kicks and slaps me. I get so embarrassed as people sometimes look on in shock. My husband works long hours 6 days a week, and is in denial. So I'm basically on my own with this. Any advice would be greatly appreciated! x

Hello,

I just wanted to try and help a little (if it does).  I have waited 2 years for a diagnosis for my eight year old, but that isn't really part of the story here. I am communicating in regards to the speech and language.  

The health officials probably reffered your son to them becuase of the feeding.  My husband has Oesophageal cancer and a freind of ours had throat cancer (not saying your son has cancer, don't be alarmed!), but they both had issues swallowing food post surgery.  They were both referred to speech and language as this can have a profound impact, it is all to do with the swallowing mechanism in the throat etc.

Your son was probably sent there first to see if they could help him with their techniques.  I understand that everything takes a long time, but in my mind, I would wait two years again any day, to know that at the end of the diagnosis, I have the correct one.  

Please don't get down hearted.  In my time without a diagnosis, I did research on sites like this to try and understand my daughter better, although I didn't apply many things in case it was wrong to do so.  It really can help to the understanding of the behaviour.  I have also found just reading some of the articles, for me especially the violence at home, really enlightening.  You suddenly realise you are not the only person going through this.

Hope it helps a little.

Take care

Wow that's such a shame, such a lot of time wasted. Hopefully now he's got it things will start to fall into place for him xx

My son started in the system when he was 2, he is 9 now and only just newly diagnosed, sometimes it can take a long long time, for others its quickers, but dont hold your breath xxx

I am not such what I am accepting when a diagnosis is still 10 months away. i just wish we had been added to the list a year ago and maybe I would be a little clearer on what we are dealing with.

Thanks

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Bob Mod

Hi, my Grandson has just been diagnosed with autism and sensory processing disorder. He will be three in October and his diagnosis only took 9 months from when he had his usual two year assessment to when we got the diagnosis. This could actually have been three months earlier but the health visitor kept holding back on sending the referral forms in. We were very lucky that, when she did, it all moved quite quickly. Fingers crossed yours starts to come to a conclusion very soon too x