From the UK - in need of advice please

Sandra - posted on 08/28/2012

Hi, it depends where you are in the UK.. I'm in the north west, here theres one doctor who covers a very large area.. The only thing you can do is go to your doctor and express your concerns, They will refer you to the paediatrician in your area.. I have a 28 month old who has just had his asessment done.. his paediatrician has sent him to a group where he has his phsyiotherapy, speech and language and a o/t.. It is really just about getting to that first appointment with the paediatrician he/she will say if there is cause for concern..

Miriam - posted on 08/26/2012

When it comes to autism spectrum disorders you really need to get some help early even if it's too soon to be sure. Getting help will never hurt and may save a lot of heartache and pain later. My son is high functioning, he has asperger syndrome and the doctors all said it was too soon except for one who said, "You're the mom and if you are worried then so am I." Moms always know best. I'm not sure what you can do in the UK. Here in the USA the public school system provides something called childfind. It is a free service. My son was diagnosed with asperger syndrome at age 3.5. It is subtle but they were right.



You might also want to get in contact with someone from the National Autistic Society. I was just in London back in April of this year and it was the day of the London Marathon. The National Autistic Society was set up right in front of our hotel because that was on the route for the marathon. My daughter and I had a nice talk with them and they gave us t-shirts and little flags to wave and encourage their runners. No doubt the people involved in the National Autistic Society can point you in the right direction. They've all been there! Here is a link to their website - http://www.autism.org.uk/

Marie - posted on 08/24/2012

Hey Simon.

I'm from the Uk living in the Usa. I have worked with children for the last 17 years. Studying for much longer than that. Every child develops differently and it truly is too soon to diagnose any problems, while there still can be some red flags that concern you and it can be worrying. Trust your judgement as a parent. Parents know their children the best of all and know when something doesn't feel right.

Recently my friend had similar issues with her two year old he was always having ear infections and she pushed for the doctors to listen turns out he had a hearing issue. He had a simple operation. The first time he was clearly hearing was emotional for all, and the first time he said mommy was wonderful.

Follow your instincts, go back to the doctors every week if that's what it takes to listen. You are your child's voice don't be afraid to speak on their behalf. If it turns out he is just talking his time and learning at his pace, fine at the end of the day you will know that you worked on his behalf to supply the help he needed

Good luck.

Esther - posted on 08/24/2012

Hello from the united states :)

Don't worry we've all been there while I won't tell the words you want to here ,I will tell you this children that are classified aren't usually done until almost three years old. That way they can attend a school that best suits them . Be. Strong and encouraged start Doing thing that you've always done a little different . It may not be a disability. It maybe an allergy . Did you know there are actual foods that will cause a child to behave as if there was a disability like wheat or milk change things up a bit you are your Childs greatest advocate. No one will fight for them as much or as hard as you will . So put on your detective hat and start digging!

Susan - posted on 08/24/2012

Diane - I'm in the US, too. My husband is British and I'm American. I was pleased we were in the US, with insurance, and were able to get an appointment within a few weeks with a pediatric neurologist for our daughter. A few weeks after she started kindergarten, age 5, we were called in to a meeting where we were informed that our daughter was "autistic, aspergers syndrome and adhd" by the kindergarten teacher, who had "diagnosed" her. She was supported by the principal and a few other school staff. We went home and called our daughter's doctor, who referred us to the pediatric neurologist. He advised she is not autistic - no where on the spectrum. He did find anxiety (who wouldn't with a teacher shouting at them?), some muscle weakness and sensory integration disorder. He wrote a prescription for 6 months occupational therapy and asked us to come back in three months so he could see her progress. He followed her for a year and told us to come back any time we needed help. He wrote a letter to the school for us. If we had been in the UK, I would have gone private. If I couldn't go private, I would have flown to the US and paid for an assessment privately.



Just a quick note: a neighbor, when we were in the UK, was stunned when she found out her child had failed the 7 yo exam (sorry, I don't know exactly what it's called). She was questioned by her parents, who found she didn't know her alphabet and knew a few numbers. They tried through the school district and were told there was a 3 year wait to see the school psychologist. They went private and their child was quickly diagnosed. With a diagnosis, they were able to get help from the school for their child.

Diane - posted on 08/24/2012

Simon and Susan - I'm an ex-pat Brit living in the USA, and while health care is really expensive here, its got some real pluses.

As Susan suggested, look for someone privately, even if its just for an initial consultation. They will then be able to give you reasons to go back to your GP and have your son referred to a specialist. The other source of good help used to be the children's clinics. The doctors and nurses who run those are usually very used to spotting when things are a bit off. They will also have contacts to specialists.

There are so many things it could be, but there seems a lot of similarities with Autism. I have a son with Aspergers, so you have to take what I say knowing that I have that bias. My son was tested for his gross motor skills and fine motor skills, and got occupational health support in school. He also got some testing and therapy around his sensory integration issues. School picked up on his speech and language and over the years that has morphed into social skills which addresses the eye contact.

The hyper focus (doesnt hear you when you call) and the attention deficit (cant settle to regular tasks, including sitting still) is so very confusing, but it is what my son did and does (he's 17).

In terms of him asking for what he wants rather than screaming and shouting - oh, I remember that so well! I have two other kids with attachment issues, and the parenting advice from there is you need to teach them to use their words, and give them chances to re-do something, over and over if necessary. At two and a half, that might be tough but still possible to lay the ground work for that.

I think looking for things they do well and rewarding them for that, is huge. Spending time playing with them and letting them guide the play, is also very useful.

Good luck and hang in there. Remember that you are being a great parent for even reaching out to ask for this help. Keep at it.

Susan - posted on 08/24/2012

Simon - this is an issue you may need to go private on rather than rely on the NHS, at least in order to get an initial assessment. I don't know anyone in the UK working in this area, but when I put "pediatric neurologist UK" there was a post on a site suggesting someone go see this person:

"Dr. Chelvi Kukendra-Rajah, Clementine Churchill Hospital, Sudbury Hill, Harrow, HA1 3RX." I also see a Dr. Colin Kennedy listed at the University of Southampton.



I do know that when I worked at the John Radcliffe in Oxford, there were several comments about doctors having private practices on the side that patients used to get around the waiting list. I do not know how accurate those comments were.



I can tell you that if my husband ever makes me move back to the UK, we'll be taking out private health insurance. We have a child with Sensory Integration Disorder, and I would want support that wouldn't include a year long waiting list when we have a problem.

Pat - posted on 08/24/2012

You can also try the Brain Talk forum http://www.braintalkcommunities.org/foru... There is an autism forum and you might find some help there as well. It definitely sounds like something is up and you should pursue it with the doctors.



Pat

Anita - posted on 08/24/2012

I am thinking you may wish to have the childs hearing tested. We thought our grand daughter was just being lazy and letting her siblings speak for her until we found out she is partially deaf. Sometimes its fixable, sometimes not, but it sure is a lot less stress to know whats going on! Its pretty normal for kids to appear a bit bow legged till they no longer wear diapers...best of luck!

Rachel - posted on 08/23/2012

He may be autistic. There are lots of articles online but I would try and see if maybe you could find a support group to find a good doctor and also you may want to see if a university hospital can see him. A lot of times they are more aware of the latest advancements in the medical community. May God bless your family and guide your search for answers.

Anaquita - posted on 08/23/2012

I don't live in the UK, so I wouldn't know whom. Talk to your son's pediatrician for a referral to one.

Simon - posted on 08/23/2012

thank you - but any idea on who i would contact please?

Anaquita - posted on 08/23/2012

The lack of sitting still is normal for a two year old boy. The legs pointing inwards may be a physical issue, bring it up to a pediatrician. Some kids play so intensely they don't hear their names, but what you said, combined with the screaming, I say find a pediatric neurologist to see him. Not just someone at the hospital, but a specialist that will be able to properly evaluate.