Autism or Asberger 4 year old special needs grandson???? Desperate grandpa & grandma begging for your help

[Jesussurfing4me]

62-year old grandpa looking for answers for my 4-year old grandson Shane. These so-called experts (not all of them) amaze me to know just how incompetent they are but it doesn't matter to them. My wife Debbie and my youngest son Michael noticed the problem with Shane 2 to 2 1/2 years ago. We all thought he had Autism but the first bunch said no, it was his hearing. The State did his IEP and placed in severely mentally disabled preschool and that's that. Shane can't talk, dress himself, screams all the time, still in diapers, hits his mom, brother and my wife. I will be checking in later with additional detailed information.

[Hidden]

I am so sorry to hear of your Grandsons issues. The lack of understanding of the Autism Spectrum is shocking throughout the World. There is very little good understanding .

If you look through my previous posts you will read about the issues in Autism Spectrum. Your grandson shows blatent evidence.

Can I also suggest you look at Pathological Demand Avoidance. It's a rare form of Autism that's been recognised since the 1980s by an inspirational Professor in Nottingham. It's very much a Post Code Lottery whether the Local Autority recognises the symptoms in the UK.

To understand PDA you first have to understand Autism Spectrum. The Stratagies are completely different to normal Autism Spectrum. You can have PDA on its own , or with Asbergers , normally ADHD is diagnosed first. Your grandson might also be dyslexic, have Dyspraxia , sensory processing disorder, thereare all sorts of co Morbid issues.

You must find a Consultant who is an expert in Autism Spectrum.

Hope this helps and Good Luck xx

healthunlocked.com/hoffmann...

pdasociety.org.uk//forum#/d...

There are lots of links and suggested reading matter on this link.

I also suggested if you think PDA could be an isssue there is a USA support group listed on the FB Blog Pages link.

autismspeaks.org/blog/2013/...

Bedwetting and incontinence is common in Autism Spectrum.

autism.org.uk/about/health/...

ambitiousaboutautism.org.uk...

facebook.com/PlanetOughtism

friendshipcircle.org/blog/2...

It's a Worldwide Scandal but people across the Globe are now joining together to expose the truth.

You don't need to post any more information you have enough evidence of Autism Spectrum with the information posted. Each case is unique , no two cases will be the same. Go back to Grandparents on both sides and see if the co existing issues like Epilepsy, Bi polar, Dyslexia, etc has affected others.

[emmasue]

I can't really add any more to Yiman's post but I will say that you aren't alone. My son was just diagnosed with Autism Spectrum Disorder just a few weeks shy of his 11th birthday. We have been asking for help for years and we went through ADHD (no, because he can settle sometimes), Dyspraxia (no, because he is good at somethings), and the school saying that "We don't see anything wrong, except for the fact that he is annoying in class!" We also have problems with my 8 year old daughter - speech and language delay, toileting issues, severe clinginess, learning difficulties, but we are still fighting for her to be seen by an educational psychologist. She is on the waiting list to be assessed for ASD, but it may be another 6 months till she is seen. So I do understand how frustrating it is. I've heard other mothers describe suffering from Post-Traumatic Stress after going through the process. I can totally understand where they are coming from. I wish you the best and all I can say is to be strong and keep fighting. Your grandson needs you not to give up. Hope you have a better 2017!

[Hidden in reply to emmasue]

It's Absolutly shocking having to wait years like we have for a diagnosis.

Found out too late in Scotland under the Additional Support for Learning Act you don't need a diagnosis.

parliament.scot/GettingInvo...

The Scottish Parliament will be discussing PDA in January. Watch this space !!!

Good Luck to all parents with children on the Spectrum. May 2017 be life changing in the way it's understood and game changing in Policies and Stratagies.We don't need talk we need action .xxxxxxxxxxxxxxxx

[davidgolf49]

Why do you doubt the professionals report?

[Edited by HU]

[Jesussurfing4me]

Because we haven't had a professional diagnose my grandson. So far the only thing we've been told is he has a hearing problem. I raised a step son who was down syndrome and my wife was told when he was born he would never walk, talk, feed himself, she would have to do everything for him. I met her when Damion was 3 months old and we were married a year later. Her husband left her while she was in the hospital because Damion was down syndrome. I worked with him every day and by the time he was 4 years old he could do pretty much everything on his own. He's been living in a group home for the past 16 years. So I am a bit skeptical of some so called experts.

[davidgolf49 in reply to Jesussurfing4me]

I advise you to listen to the professionals, he has bad hearing and is developing slowly, ok, but he might soon catch up and surprise you, but it does sound like it could be Autism related..

Why not seek out a private autism assessment for children, and then accept their report.

Children develop varyingly, I was a child who was constantly sent home from primary school because the teachers didn't want a child who was in their eyes 'out of control'

I am a sports professional, but I taught myself everything.

[Edited by HU]

[figment]

Echoing the advice of the others, I will add to not stop the fight for the official diagnosis. I too found that the 'professionals' weren't helpful whatsoever, I would even go so far to say that CAMHS and social services were absolutely useless and it was me versus them all of the time. I noticed that my son wasn't developing as he should when he was 18 months old and brought it to the attention of the health visitor, she agreed and he was seen at a centre where he concurred that there were issues with his development. He also had to attend a speech and language centre. I initially thought it was ADHD, but I was told that he was too young to be assessed. Once he attended reception at primary school I was told that the school had to arrange help as the health visitor only dealt with pre-schoolers. I have been fighting since and I'm sure that all of the stress has impacted if not caused my health condition (I have m.e.). It has been a long very stressful road, and they even tried blaming me, saying that my divorce caused his behaviour (despite me telling them, that the problems in the marriage and subsequent divorce didn't occur until many years later). They also tried saying he had 'attachment syndrome' and a load of other baloney. There was a lady that worked with his youth support worker (due to a family tragedy, he could no longer attend mainstream school and was assigned online learning and a youth support worker) that saw him for only an hour and picked up on something, she telephoned me to say that he was showing traits of autism, I cried with relief that someone finally had noticed. It was her that pushed for him to be assessed, CAMHS initially refused but she wasn't letting up and thankfully they finally listened to her. He was diagnosed on the Autism Spectrum Disorder last July, one month before his 16th birthday, I've been fighting 'the system' for 14.5 years and now they have finally admitted what I've known since he was 18 months old. I sincerely hope that your family don't have this long fight on your hands, but since speaking to other parents, they either had the same fight, thankfully not for as long as I did, but it was a good few years nevertheless, and other parents who are currently battling and feeling very angry and frustrated. My youngest daughter works at a nursery school and attended a special needs course, she had a word with the tutor at the end and spoke about her brother, he was disgusted by the way that we'd been treated and told her to tell me to sue them for 'neglect of care', though that would just be added stress, but I'm mentioning it as if you suggest that to people who are 'professional' then that may be the kick that they need to act to help your grandson. Wishing you the best of luck.

[SparkleSparkle]

Have you looked at NHS choices? I'll give you a link to ASD, which is what I have, I was like that at around 3-4 years old, but it might also be a learning curve?

nhs.uk/Conditions/Autistic-...